Patient evaluation of end-of-life care

Abstract

The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient.

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

“…The literature on the Netherlands provided information about a variety of settings in which EoL care is provided and the experience and role of health professionals involved [23], [24], [25], [26], [27], [28], [29], [30]. End of life care used to be part of the country’s highly developed home care system, with general practitioners playing an important role, which was further encouraged by national healthcare policy [25], [28].…”

“…Issues relating to communication revolved mainly around advance directives (ADs) [41], [50], [51], [52], [53], disclosure and information giving [26], [54], [55], [56], [57], [58], [59]. The issues relating to ADs were determined by the euthanasia situation.…”

The health care experience of patients with cancer during the last year of life: Analysis of the SEER‐CAHPS data set

“…Satisfaction can influence a variety of behaviors and outcomes, and is related to quality of care and quality of life among individuals shortly before death . Only a few studies to date have examined satisfaction with health care among individuals with cancer in their last year of life . These studies may include mixed populations, including individuals with cancer and other serious medical conditions, and generally have samples that cannot provide detailed assessments of the factors influencing a patient's experience with health care in the last year of life.…”

Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care

“…Although patients need existential support, it has been stated that healthcare staff sometimes fail to support the patients in regards to these issues (de Vogel-Voogt et al, 2007;Strang and Strang, 2001), that training healthcare staff in existential issues is insufficient and that there is a vagueness concerning their role in these situations. (McSherry and Cash, 2004;Strang et al, 2002).…”