Appropriate and inappropriate care in the last phase of life: an explorative study among patients and relatives.

BACKGROUND: Many people are in need of care in the last phase of life. However, the care they receive is not always appropriate. For instance, people can receive overly aggressive treatment or can have limited access to palliative care. The term appropriate care is often used by policy makers, while it is unclear what care recipients consider as appropriate care. This study aims to identify what care patients and relatives perceive as appropriate and as inappropriate in the last phase of life, for patients suffering from different conditions. METHODS: We designed an online survey with open questions. Participants were recruited through organizations for patients, older people and medical professionals. Answers were analysed after data-driven coding. Forty-five patients and 547 relatives described the care they received and described why this care was appropriate or inappropriate. RESULTS: Participants described more cases of appropriate care than inappropriate care. The cases of appropriate care were diverse, but all involved care in (one or more of) five dimensions; supportive care, treatment decisions, location, the role of the patient's wish and communication. Each of these dimensions was frequently described (39-62 %). When care was inappropriate, this mostly involved inappropriate treatment decisions (69 %; especially overtreatment was frequently mentioned), and poor communication (50 %). There was considerable consistency in what was seen as (in)appropriate care across different conditions. However, especially patients suffering from other physical diseases than cancer more often received inappropriate care. CONCLUSION: From the perspective of patients and relatives, appropriate care in the last phase of life is a broad concept. Caregivers should be aware of the diversity of care needs in the last phase of life. Especially treatment decisions and communication can be improved.

Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living?

BACKGROUND: Euthanasia and physician-assisted suicide (EAS) in patients with psychiatric disease, dementia or patients who are tired of living (without severe morbidity) is highly controversial. Although such cases can fall under the Dutch Euthanasia Act, Dutch physicians seem reluctant to perform EAS, and it is not clear whether or not physicians reject the possibility of EAS in these cases. AIM: To determine whether physicians can conceive of granting requests for EAS in patients with cancer, another physical disease, psychiatric disease, dementia or patients who are tired of living, and to evaluate whether physician characteristics are associated with conceivability. A cross-sectional study (survey) was conducted among 2269 Dutch general practitioners, elderly care physicians and clinical specialists. RESULTS: The response rate was 64% (n=1456). Most physicians found it conceivable that they would grant a request for EAS in a patient with cancer or another physical disease (85% and 82%). Less than half of the physicians found this conceivable in patients with psychiatric disease (34%), early-stage dementia (40%), advanced dementia (29-33%) or tired of living (27%). General practitioners were most likely to find it conceivable that they would perform EAS. CONCLUSIONS: This study shows that a minority of Dutch physicians find it conceivable that they would grant a request for EAS from a patient with psychiatric disease, dementia or a patient who is tired of living. For physicians who find EAS inconceivable in these cases, legal arguments and personal moral objections both probably play a role.