Bereaved relatives' perspectives of the patient's oral intake towards the end of life: a qualitative study.

BACKGROUND: Patients approaching death often have a decreasing oral intake, which can be distressing for relatives. Little is known about the relatives' experiences with and perceptions of oral intake at the end of life. AIM: This study aims to contribute to a more thorough understanding of relatives' concerns regarding decreased oral intake of the patient at the end of life. DESIGN: Qualitative interview study: semi-structured interviews were transcribed verbatim and analysed using qualitative content analysis. SETTING/PARTICIPANTS: Twenty-three bereaved relatives of patients who had been referred to a New Zealand palliative care service were interviewed. RESULTS: All relatives experienced significant changes in patients' oral intake at the end of life. Oral intake towards the end of life was considered important and is perceived as meaningful by relatives in different ways, such as nutritional value, enjoyment, social time, daily routine and a way of caring. Relatives responded differently to decreasing oral intake; some accepted it as inherent to the dying process, others continued efforts to support the patient's oral intake. Some relatives perceived decreasing oral intake as the patient's choice, and some viewed maintaining oral intake as part of the battle against the disease. Relatives recalled limited communication with health-care professionals concerning oral intake at the end of life. CONCLUSIONS: This study revealed the complexity of meaning relatives' experiences with dying patients' decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.

Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study.

BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.

Issues and needs in end-of-life decision making: an international modified Delphi study.

BACKGROUND: end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients' comfort in the last days of life. AIM: the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions. PARTICIPANTS: 90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence. RESULTS: experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives' wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches. CONCLUSIONS: palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.

Staff perceptions of end-of-life care following implementation of the liverpool care pathway for the dying patient in the acute care setting: a New Zealand perspective.

BACKGROUND AND METHODS: Ensuring appropriate palliative and end-of-life (EOL) care in the acute environment is complex and challenging. The Liverpool Care Pathway (LCP) aims to support staff to provide holistic EOL care utilizing a structured framework to prompt and guide care. We report on the post-implementation findings of a mixed methodology (survey and focus group [FG] forums) study into staff perceptions of EOL care following the pilot implementation of the LCP into two acute wards. RESULTS AND CONCLUSIONS: Study results suggest that within acute settings staff perceive that the LCP improves EOL care overall, assists interdisciplinary communication around death and dying, and that is a useful tool to positively influence decision making and care delivery. Further research into aspects of staff communication, diagnosing dying, changing direction of care, and the physical environment is warranted.