A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions

Vesey, Siobhan; Leslie, Paula; Exley, Catherine

doi:10.1007/s00455-008-9149-0

Cited by 19 publications

(15 citation statements)

References 26 publications

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“…The process of decision-making deserves exploration [16]. In quantitative studies, factors found to affect decisionmaking by pwALS in terms of NIV (and ventilation more generally) and gastrostomy include disease characteristics such as severity of symptoms [17]; demographic factors such as gender, age, educational level and IQ; and various psychological characteristics such as health beliefs, understanding of the illness, attachment to life, religiosity and mood (see [17][18][19][20][21][22][23]) as well as carer-rated everyday behavioural change indicative of executive dysfunction [17].…”

Section: Introductionmentioning

confidence: 99%

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Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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Section: Introductionmentioning

confidence: 99%

“…The qualitative studies that exist used semi-structured interviews or questionnaires [16,39,40] or investigated an a priori list of potential influencing factors [26]). However, they all provide limited understanding of the direct experience of pwALS in their specific decision-making process.…”

Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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“…Against this background, patients make many decisions concerning symptom management and quality of life throughout the course of the disease. Decisions may include choices between invasive and noninvasive ventilation,7–9 insertion of gastrostomy to facilitate adequate nutrition and hydration,10,11 choices of mobility and communication equipment as independence decreases,12,13 completion of advance care plans anticipating future needs,14 involvement with home-based or inpatient palliative care services,15 and preferences for end-of-life care 16,17…”

Section: Introductionmentioning

confidence: 99%

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

111

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BackgroundPatients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.MethodsAn exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.ResultsDecision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.ConclusionDecision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

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“…Care is underpinned by recurrent decisions about symptom management and quality of life as the patient’s condition deteriorates 11. Patients’ decisions may include uptake of artificial nutrition and hydration,12 assisted ventilation,13,14 equipment needs,15,16 advance care plans,17 palliative care,18 and endof-life choices 19,20…”

Section: Introductionmentioning

confidence: 99%

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

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BackgroundThe aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making.MethodsThirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically.ResultsRespondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information.ConclusionPatient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

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A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions

Cited by 19 publications

References 26 publications

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

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