Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking

Abstract

BackgroundDysphagia and other eating and drinking difficulties are common in progressive neurological diseases. Mealtimes can become a major source of difficulty and anxiety for patients and their families. Decisions about eating, drinking and care can become challenging as disease progresses, and the person in question loses the capacity to participate in decisions about their own care. We sought to investigate how patients and their family members make decisions about their future care as their condition deteriorates, with a particular focus on mealtimes, eating and drinking.MethodsLongitudinal qualitative in-depth interviews were undertaken with patients and their family members (N = 29) across a range of disease groups, including: dementia, Parkinson’s Disease, Huntington’s Disease, Progressive Supranuclear Palsy, Motor Neurone Disease, Multiple Sclerosis. Patients had varying degrees of eating and drinking difficulties, and levels of decision-making capacity. Interviews were ‘participant led’ and undertaken in the patients’ own homes or a place of their choosing. Follow-up interviews were three months to one year later depending upon disease trajectory. Interviews were audio recorded and analysed in NVivo using a Thematic Analysis approach.Results Twenty-nine participants were interviewed between 2015 and 2017. Two key themes emerged from the analysis: 1) Health Literacy: the extent to which patients and relatives appeared to know about the condition and its treatment. Patients and their family members varied in their ability to speak and communicate about their condition and prognosis. 2) Planning style: the extent to which participants appeared to value involvement in advance care-planning. Patients and their family members varied in the way in which they made decisions: some preferred to ‘take each day as it comes’, while others wished to plan extensively for the future.ConclusionsIssues with eating and drinking are often overlooked. Clinicians need to understand both the patient’s level of health literacy and their style of planning before communicating with patients and their families about these sensitive issues.

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

“…Advance care planning discussions involved a range of topics and terms (Appendix C), including advance directives [14,26,38], advanced decisions [30] and living wills (the individual writes wishes for end-of-life care in the event that they become unable to communicate decisions) [14,38,40], medical orders (standardized forms that address major healthcare decisions), e.g. on cardiopulmonary resuscitation (CPR) [14,15,29,40,42], ventilation [15,40], intensive care unit [15], nutrition/ artificial feeding [6,14,15,40], symptom control [7,14,15,37], hydration [37], preferred place of death [14,15,37], respite [7,24,34] and power of attorney/ healthcare proxy [14,38].…”

“…Studies varied in their approach to delivering information and the amount given. In early disease stages, patients often did not want this information due to fear, denial, hope of a cure, wanting to live a normal life or to focus on symptom control [5,6,23,25,26,35,40,43]. On the other hand, some patients and family carers wanted to know about prognosis and the disease trajectory early.…”

“…They were published after the date of our electronic search and included after screening for relevance. A total of 27 studies were included, of which 15 were qualitative [5][6][7][23][24][25][26][27][28][29][30][31][32][33][34] and 12 were quantitative [14,15,[35][36][37][38][39][40][41][42][43][44].…”

“…Despite studies exploring ACP in neurodegenerative conditions [5][6][7], international working groups concluded that there is a lack of research in ACP [8,9]. However, ACP should be considered in PD and atypical parkinsonian disorders, as these progressive conditions lead to increasing disability due to physical and neurobehavioural symptoms with advancing disease, although disease progression is variable [9].…”

A Systematic Review of Rehabilitation for Corticobulbar Symptoms in Adults with Huntington’s Disease

“…Whilst these symptoms may be primarily related to progressive cortical neurodegeneration, evidence also highlights that commonly prescribed anti-choreic medications have side effects which include dysphagia, xerostomia (dry mouth), dysarthria and drowsiness [7][8][9]. Corticobulbar impairments such as dysphagia and dysarthria are highly correlated with decreased quality of life, independence and increased care giver burden [10][11][12][13][14]. The impact of cognitive impairment and changes in mood, combined with corticobulbar symptoms affect the ability to communicate successfully and participate in meaningful social interactions [15].…”