Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision‐making among patients, family, and health care staff

Río, M I Del; Shand, Beatriz; Bonati, Pilar; Palma, Alejandra; Maldonado, Armando; Taboada, Paulina; Nervi, Flavio

doi:10.1002/pon.2099

Cited by 108 publications

(66 citation statements)

References 44 publications

(72 reference statements)

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“…Interestingly in a recent study 19 reporting on South African (SA) critical care nurses views of EOL decision making, SA nurses were more certain about such interventions. Perhaps such uncertainty is expected given that in recent review papers, use of fluids and nutrition 20 and sedation 21 at EOL is acknowledged to be contentious areas requiring more guidance needed for staff, patients and families. The lack of evidence base to guide use of passive limb exercises at EOL is unsurprising given that current evidence based recommendations 17 are mainly medically led and focussed on medical interventions.…”

Section: Discussionmentioning

confidence: 94%

Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: A mixed methods study

Coombs

Fulbrook

Donovan

et al. 2015

Australian Critical Care

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Keywords:56 57Death and dying, end of life care, intensive care, intensive care nurse, treatment withdrawal, been undertaken to explore EOL care in the context of New Zealand (NZ) intensive care nursing. 10 11Objective: To investigate NZ intensive care nurses' experiences of, and attitudes towards EOL 12 13 care. 15 16Design: Sequential mixed methods study using cross sectional survey with follow-on focus groups. 18 19Methods: NZ intensive care nurses (N=465) across four large tertiary intensive care units (ICUs) 20 21 were contacted to complete a 43-item web-based survey. A follow-on focus group was conducted 22 23 24 in each of the sites to explore specific aspects of the survey findings. 26 27Results: 203 fully completed surveys were returned (response rate 44%) from the four ICUs. Over was ethically more acceptable than withdrawing it. Whilst nurses generally supported reducing 35 36 inspired oxygen to air for ventilated patients at EOL (71%, n=139) this was also an area that 37 38 demonstrated one of the highest levels of uncertainty (21%, n=41 piloted on 14 ICU nurses from a non-tertiary ICU in NZ to determine cultural relevance to NZ. 21Minor amendments were made to clarify clinical phrases commonly used. In preparation for data collection, the study was presented to staff in each of the four study sites Results from Phase I were reviewed by MC and PF and areas of similarity and difference in 1 2 experiences and attitudes towards EOL between European and NZ ICU nurses were identified. 4Based on this, a focus group guide was developed and used in Phase 2.In Phase Two, follow-on focus groups were undertaken using a developed focus group guide to 11 12 13 explore: EOL in ICU, use of fluids, nutritional support and passive limb exercises during EOL care. 15Participants were drawn from participants in Phase One. Consent was gained prior to focus group were considered to be much less important (63%, n = 128 and 44%, n = 90; respectively). 32Most respondents indicated that the patient's (68%, n = 138) and family's (55%, n = 111) the religious views of medical or nursing staff to be as important (see Table 2.) Most 37 38important was considered to be the medical and nursing teams' assessment that the The majority of nurses who had been directly involved in EOL care of a patient had also actively 4 5 participated in decision-making about withholding or withdrawing treatment (70%, n = 137). 7Furthermore, there was a significant association between active involvement in EOL-decision- EOL decision-making process. Focus group participants held varying views on the use of intravenous fluids and nutrition at EOL. 50Some identified that there was confusion around their purpose and that 'dehydration was a Although results of this study cannot be generalised, the survey response rate suggests that Phase 22One results can reasonably be assumed to broadly represent the views of tertiary New Zealand specific aspects of nursing care at EOL is required.

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Section: Discussionmentioning

confidence: 94%

Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: A mixed methods study

Coombs

Fulbrook

Donovan

et al. 2015

Australian Critical Care

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“…The dry oral environment caused by salivary hypofunction may increase the risk for developing oral conditions including candidiasis and dental caries and may contribute to oral functional complaints, such as dysphagia and chewing difficulty. Moreover, hyposalivation may be related to nutrition intake and hydration status in patients at their end of life [11, 27]. Orofacial pain assessment included self-report of facial pain, intraoral pain, mouth sores, and shooting or sharp extraoral/intraoral pains.…”

Section: Discussionmentioning

confidence: 99%

Oral health conditions affect functional and social activities of terminally ill cancer patients

Fischer

Epstein

Yao

et al. 2013

Support Care Cancer

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Purpose Oral conditions are established complications in terminally-ill cancer patients. Yet despite significant morbidity, the characteristics and impact of oral conditions in these patients are poorly documented. The study objective was to characterize oral conditions in terminally-ill cancer patients to determine the presence, severity, and the functional and social impact of these oral conditions. Methods This was an observational clinical study including terminally-ill cancer patients (2.5–3 week life expectancy). Data were obtained via the Oral Problems Scale (OPS) that measures the presence of subjective xerostomia, orofacial pain, taste change, and the functional/social impact of oral conditions and a demographic questionnaire. A standardized oral examination was used to assess objective salivary hypofunction, fungal infection, mucosal erythema, and ulceration. Regression analysis and t test investigated the associations between measures. Results Of 104 participants, most were ≥50 years of age, female, and high-school educated; 45% were African American, 43% Caucasian, and 37% married. Oral conditions frequencies were: salivary hypofunction (98%), mucosal erythema (50%), ulceration (20%), fungal infection (36%), and other oral problems (46%). Xerostomia, taste change, and orofacial pain all had significant functional impact; p<.001, p=.042 and p<.001, respectively. Orofacial pain also had a significant social impact (p<.001). Patients with oral ulcerations had significantly more orofacial pain with a social impact than patients without ulcers (p=.003). Erythema was significantly associated with fungal infection and with mucosal ulceration (p<.001). Conclusions Oral conditions significantly affect functional and social activities in terminally-ill cancer patients. Identification and management of oral conditions in these patients should therefore be an important clinical consideration.

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“…Although such discussions and the information about the patients' priorities and sorrows are of utmost importance for decision-making and for other health care professionals involved in patient care, physicians seldom document such communications and aspects of disclosure of prognosis, advance care planning, and patient priorities [8] . As a result, treatment decisions are sometimes inconsistent with the patients' priorities, needs, and expectations [21] . For example, many patients with advanced cancer are offered systemic and aggressive treatment options even in very late stages of the disease while comfort care options are not explained [8] .…”

Section: Communication Identification Of Fears and Advance Care Planmentioning

confidence: 99%

Early Palliative Care: Pro, but Please Be Precise!

Gärtner¹,

Daun

Wolf

et al. 2019

Oncol Res Treat

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Background: By definition, palliative care (PC) is applicable already in early stages of incurable and life-threatening diseases, in conjunction with therapies that are intended to prolong life, such as for example chemo- or radiotherapy. Many patients suffer from distressing symptoms or problems in early phases of such illness. Therefore, it is not a question of “if” PC should be integrated early into oncology, but “how.” General PC is defined as an approach that should be delivered by healthcare professionals regardless of their discipline. This is often referred to as “general” or “primary” PC. For this, routine symptom assessment, expertise concerning basic symptom management, and communication skills are basic requirements. Communication skills include the willingness to engage in discussions concerning patients' fears, worries and end-of-life issues without the fear of destroying hope. Specialist PC is provided by specialist teams regardless of the patients' disease, be it cancer or non-cancer. Such teams should be integrated in the care of PC patients depending on the availability of these services and the patients' needs. Key messages: “Early PC” must not be used synonymously with “early specialist PC” because much of the PC is delivered as basic oncology PC. For the integration of specialist PC, the identification of triggers is warranted in different institutions to facilitate a meaningful and effective cooperation. Such cooperations should be based on patients' needs, but must also account for questions of availability and resources.

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Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision‐making among patients, family, and health care staff

Abstract: Our literature review reveals that these social, emotional, and clinical misperception elements should be considered in the decision-making processes to help the triad develop functional forms of care at this final stage of life. Copyright © 2011 John Wiley & Sons, Ltd.

Cited by 108 publications

References 44 publications

Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: A mixed methods study

Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: A mixed methods study

Oral health conditions affect functional and social activities of terminally ill cancer patients

Early Palliative Care: Pro, but Please Be Precise!

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