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

Abstract

BackgroundMany 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.MethodsWe 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.ResultsParticipants 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.ConclusionFrom 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.

Ethical considerations for HIV cure-related research at the end of life

“…Moreover, EOL clinical research requires careful design and execution, as well as sensitivity to participants’ needs [ 27 ]. Terminally ill individuals have specific physical, psychological, social and spiritual needs while preparing for death and achieving life closure [ 74 , 86 ]. We believe in the need for patient-participant-centered clinical research with terminally ill PLWHIV.…”

Current Trends and Possibilities of Providing Medical Palliative Care in Chronic Heart Failure

“…E. Bolt и соавт. в исследовании с участием 592 человек -45 (8 %) пациентов в терминальной фазе жизни и 547 (92 %) родственников -показали, что потребность в уходе и его высоком качестве как со стороны пациентов, так и родственников одинакова, несмотря на то что каждый человек имеет свои особые предпочтения в конце жизни [33]. При характеристике «должного ухода» авторы исходили из принципа: «хороший уход -это должный уход.…”

Counterpoint: Provider moral distress in end‐of‐life oncology care is a moral crutch

“…Prognostic uncertainty, the questionable appropriateness of life‐sustaining interventions, and the complex task of balancing the benefits and burdens of various treatments can complicate the process of shared decision‐making, leading to differing expectations and preferences between care providers and patients/surrogates at the EOL. Great effort has been made to differentiate high quality from overly aggressive EOL care, but these determinations are typically made by clinicians and are not always in agreement with those of patients/surrogates …”

“…Great effort has been made to differentiate high quality from overly aggressive EOL care, 7,9 but these determinations are typically made by clinicians and are not always in agreement with those of patients/surrogates. 10 Perceived overtreatment of patients at the EOL is highly associated with moral distress in attending physicians, 11 particularly when that care is perceived by them to be medically inappropriate or futile. 12 Similarly, trainees managing what they feel to be medically inappropriate EOL decisions of patients describe those decisions as cruel or even abusive, later expressing feelings of deep violation and traumatization.…”