Access to and characteristics of palliative care‐related hospitalization in the management of end‐stage renal disease patients on renal replacement therapy in France

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Consensus recommendations support referral to palliative care for patients with advanced organ damage, multiple coexisting conditions, frailty, or with a high symptom or iatrogenic treatment burden1; all of these characteristics may concern many patients with end‐stage renal disease (ESRD).2 Nonetheless, palliative care is seldom proposed to these patients despite a mortality rate and disease burden as high as those among cancer patients.4 Fatigue, anorexia, pain, dyspnoea, and anxiety are common problems in ESRD patients, with prevalence rates of 50% or higher.6 Palliative care may be valuable when dialysis is not considered as an option10 and for patients withdrawing from dialysis,11 but also in those continuing dialysis, in view of the intensity of their end‐of‐life care.14 In 2000, the Dialysis Discontinuation Study Group showed that after withdrawal of dialysis, 15% of patients had bad deaths, with nearly half (47%) experiencing pain on their last day of life (severe pain for 5%).15 In the US, 13.5% of the deceased patients on dialysis used hospice; even among patients who withdrew from dialysis, whose death is usually certain, only 42% of them used hospice.11
Palliative care is a multidisciplinary approach to specialized medical care for people with serious illnesses with the goal of providing symptom relief and pain management. It can be offered by an institution predominantly specialized in providing care in an end‐of‐life setting (like hospices). But it can also be organized by a team of doctors, nurses, and other professional medical caregivers, at the facility where a patient will first receive treatment, i.e. the dialysis centre for example or at home. France has specific laws on palliative care mostly to ensure the right to adequate access to palliative care and supportive care for any citizen requiring this care.16 The general philosophy of the organization of palliative care in France is to allow a suitable support whatever the location of life of the patient. This organization is based on a few specialized teams who provide support to health care professionals, the patients and their relatives and who have a mission of training and research. These teams do not usually provide direct care. These teams are grouped into palliative care units, which are linked to hospital structures, working in mobile form for some in hospital, and for others also at home or in hospices. Networks of palliative care are working as mobile units and coordinate home care. However, the supply in palliative care is still not enough with 132 hospital palliative care units and 389 mobile teams in 2014 in France. Hospital beds are reserved for the most complex situations according to medical and/or psychological and/or social context. Specialized units are dedicated to more severe patients and some dedicated beds are also positioned in non‐specialized units whose principal activities are not palliative care. As other medical cares, those palliative cares are reimbursed by the National Health Insurance for all the patients. In this study, we assume that even if palliative care is administered at home or in the nephrology unit, once in his trajectory the patient will experience a palliative care‐related hospitalization in a dedicated bed or a specialized unit.
To our knowledge, the current access to any kind of supportive care for dialysis patients is not well documented and in particular, the access of dialysis patients to palliative care has never been quantified in Europe. The aim of this study is therefore to analyze the place that palliative care‐related hospitalization occupies in the management of ESRD patients on dialysis in France, by describing the characteristics of these hospitalizations, the clinical status of the concerned patients, and the use of palliative care in those stopping dialysis.
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