Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Abstract

Background

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Objective

The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care?

Setting and participants

Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically.

Results

Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’.

Discussion

Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients' cyclic decision‐making patterns and facilitating carer inclusion in decision processes.

Conclusions

The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.

Introduction

Patient‐centred and shared approaches to decision making have been shown to benefit patient satisfaction, health behaviours and health status.1 Models of shared decision making are used to facilitate choices between treatment options,2 particularly where there is uncertainty about treatment outcomes.3 Nine essential elements of shared decision making have been found to form the basis of discussion between patients and health professionals.4, 5 These elements are as follows: defining the health‐care problem; presenting options; discussing the benefits, risks and costs; clarifying patient values and preferences; discussing patient ability and self‐efficacy; presenting what is known and making recommendations; clarifying the patient's understanding; making or explicitly deferring a decision; and arranging follow‐up.4 The purpose of this paper is to develop a model of patient‐centred decision making that preserves these elements within in a complex and changing disease context.

The trajectory of amyotrophic lateral sclerosis (ALS), also known as motor neurone disease, presents numerous challenges to established models of patient‐centred decision making used in cancer care,6 chronic disease management7 and end‐of‐life care.8 A rapidly progressive and fatal multisystem disorder, ALS has no cure and few treatment options to address diverse symptoms.9 Symptoms are expressed in a range of clinical presentations or phenotypes.10 In addition to physical deterioration, over 80% of patients develop communication difficulties.11 A smaller proportion of patients show evidence of cortical change resulting in mild cognitive impairment,12, 13 and changes to behavioural function.14 Carer burden increases when cognitive and behavioural changes are present.15 Even so, the impact of mild cognitive and behavioural change on decision making is yet to be determined. Average patient survival time is two to 3 years.16 Patients and families are faced with many complex decisions for symptom management and quality of life as they come to terms with the diagnosis,17 and each new loss in the patient's physical capacity and social roles. Patients with ALS require decision making tailored to their deteriorating condition, increasing psychosocial needs and dependence on carers. An examination of the literature identifies the issues and limited options available for ALS symptom management.18, 19, 20, 21 Patients may have to choose between interventions to support feeding and hydration, ventilation, saliva management, mobility, communication, personal care and end‐of‐life care.19 At any point in time, patients may have only a single option to consider,22 moving between interventions as their health deteriorates. Patient care is optimally delivered through specialized ALS multidisciplinary clinics.23 However, access to specialized ALS care is frequently limited to metropolitan and large regional areas. Clinic attendance in Scotland has been estimated at 21% of patients with ALS.18 Estimates of Australian patients attending clinics are not available, as data from the Australian Motor Neurone Disease Registry24 are provided, in the main, by patients attending specialized clinics. Patients living outside metropolitan areas may have access to general neurology services and local primary care teams. Due to their complexity, ALS care decisions frequently involve consultation with multiple health professionals. Thus, attendance at an ALS multidisciplinary clinic promotes patients' and carers' engagement with specialized services and participation in decision making.

Amyotrophic lateral sclerosis creates dynamic circumstances for decision making that differ from other life‐limiting conditions. The multisystem character of the disease produces a variety of symptoms, including potential changes to communication skills11, 25 and to executive function26 that may impact on patients' participation in decision making. Patients' inevitable decline increases the complexity of decision making and raises the importance of clinician and carer involvement. Timing is crucial to ALS decision making. Some decisions, such as artificial feeding and hydration, have a defined window of viability.27, 28 Rapid rates of progression and lengthy service waiting times call for choices to be made well in advance of their implementation. Nevertheless, decision making for each issue has to be delayed until patients reach a level of acceptance of their condition and their declining capacities. The result is that patients use a cyclical, rather than linear, process of decision making as they react, accept and adapt to change.29 Improved decision‐making relationships have been shown to benefit patient care, by increasing coordination and quality and safety of care, through improved communication and efficient use of resources.30 Normative patient decision‐making models do not adequately account for these circumstances. Decision‐making models specifically tailored to the unique issues of ALS are needed.

Patient‐centred approaches to care encompass partnerships between clinicians, patients and families, to respect the needs and values of the patient as they make decisions for care.31, 32 The perspectives of health professionals, patients and carers on ALS decision making have been examined individually.33, 34, 35 Participant viewpoints have been reported in isolation, or at best with brief concern for the views of others.21, 36 The congruency or compatibility of these three perspectives is yet to be considered. By comparing stakeholder perspectives, we gain insight into the complexities surrounding patient choices and the decision‐making connections between patients, carers and clinicians.37

The aim of this study is to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care? This question will be examined by comparing the perspectives of patients with ALS, their carers and health professionals. We will draw on this investigation to develop a dynamic decision‐making model, to guide specialized multidisciplinary ALS care and optimize stakeholder engagement. The model will be derived from literature on patient decision making and ALS care, and our study data, to better reflect the needs of patients with ALS.

Method

Participants and setting

This study utilized qualitative methods to ascertain the perspectives of three stakeholder groups in ALS decision making.38 Convenience sampling38 was used to recruit the participants from two specialized ALS multidisciplinary clinics in south‐eastern Australia. Fifty‐four respondents were recruited from the clinics. These were 32 health professionals, 14 patients and eight carers (Table 1). Patient's physical status was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale‐Revised (ALSFRS‐R).39 This scale ranks features including mobility, self‐care, eating and respiration from 0 (minimal physical function) to 48 (full physical function). Patient scores ranged from 22 to 47 (mean = 35.3). Fifty percentage of patients were independently mobile, and 71% were able to communicate verbally. Several patient and carer participants were in the following relationships: patient–carer spouse couples (n = 5); adult children caring for a patient participant (n = 1); and parent caring for a patient participant (n = 1). Six patients participated without their carer taking part, and one adult child carer participated without the involvement of a patient.

Table 1.

Participant demographics

Characteristic	Participants
	Patients	Carers	Health professionals
Recruitment	Invited = 30	Invited = 24	Invited = 37
	Recruited = 14	Recruited = 8	Recruited = 32
	Response rate = 47%	Response rate = 33%	Response rate = 89%
Age at interview (years)	Mean = 60.5 (range 40–77)	Mean = 56 (range 33–76)	_
Gender	Male = 7	Male = 3	Male = 9
	Female = 7	Female = 5	Female = 23
ALS experience	Time from diagnosis (months)	Duration as carer (months)	ALS experience (years)
	Mean = 32 (range = 2–93)	Mean = 40 (range = 6–96)	Mean = 8.4 (range = 1−30)
Relationship status	Married/partner = 11	Married = 6	–
	Single/divorced = 3	Single = 2
Employment	Employment status: Working = 5 Ceased employment due to health = 7 Retired = 2	Employment status: Working full time = 4 Working part time = 1 Not working/retired = 3	Professional role: Allied health = 13 Medicine = 9 Nursing = 5 ALS association regional advisor = 2 Clinical researcher = 1 Clinic coordinator = 1 Palliative care volunteer = 1

The study sites were a metropolitan and a regional clinic offering comprehensive ALS services, including neurology, palliative care and allied health services. The clinics were linked to gastroenterology and respiratory services and were supported by the ALS association. Patients attended the clinics every 2 months, or as needed.

Procedure

We responded to the limited research into ALS decision making using an exploratory approach,40 to provide foundational research in an area lacking previous investigation.41 Qualitative methods facilitated in‐depth examination of participants' viewpoints.38 These methods promoted sensitivity in an emotionally charged subject area, by allowing participants to discuss their experiences in their own way and to identify issues not captured by the interview guide. The researcher had expertise in clinical interviewing and was responsive to participant levels of distress.

Respondents participated in semi‐structured interviews. Interview topics (Table 2) were derived from the patient decision‐making literature and then revised in relation to ALS characteristics and clinical care. Human research ethics approvals were provided by the University of New South Wales and participating health services. Interviews were held between April 2011 and May 2012 and lasted between 30 and 60 min.

Table 2.

Interview topics

Topic	Participants
	Patients	Carers	Health professionals
ALS experience	Response to diagnosis	Response to diagnosis	N/A
Stakeholder roles	Involvement in patient decision making	Involvement in patient decision making	Experience with facilitating patient decisions
Decisions	Interventions considered	Involvement with patient decision making	Experience with patient decision making
Patient autonomy	View of own autonomy	View of patient's autonomy	View of patient autonomy
Control	Perception of own control in decision making	Perception of patient's and own control in decision making	Health professional perception of patient and carer control
Capacity	Patient perception of own capacity	Carer perception of patient capacity	Health professional perception of patient capacity
Information	ALS information received and sought	ALS information received and sought	ALS information provided to patients and carers
Barriers and facilitators	Personal values and circumstances	Personal values and circumstances	Barriers and facilitators to decision making
Improving decision making	Suggestions to improve decision making in specialized ALS multidisciplinary care	Suggestions to improve decision making in specialized ALS multidisciplinary care	Suggestions to improve decision making in specialized ALS multidisciplinary care

Interviews were digitally recorded and transcribed. Transcript data were managed using nvivo 9 software (NVivo 9, 2010, QSR International, Doncaster, Vic., Australia). Transcripts were coded for meaning, and these codes were grouped according to themes.42 The views of each stakeholder group were analysed separately, forming subthemes. Subthemes were then combined to create themes. Themes identified factors significant to patient with ALS decision making, to provide a comprehensive picture of decision making from the triad of perspectives. Factors were included if they were common to the participant groups or if they indicated conflicting perspectives between two or more groups. Exemplar quotes are provided to illustrate significant themes.

Results

Comparison of stakeholder perspectives revealed convergent and divergent viewpoints on patient‐centred decision making in ALS multidisciplinary care. Six overarching and interrelated themes of patient decision making emerged (Table 3). The themes were as follows: the process of decision making; a patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. The six themes, and the subthemes representing each stakeholder perspective on that theme, are summarized in Table 3.

Table 3.

Stakeholder perspectives on ALS decision making

Theme	Health professional	Patient	Carer
Decision‐making process	Decision making with patientCarer participation dependent on circumstances	Share decision making with carers Guided by health professionals' expertise	Participate with patient and health professionals
	Patient participation reliant on acceptance of diagnosis	Cyclic process of accepting and adapting to change	Promote patients' acceptance of change
	Early discussion of disease trajectory and symptom management optionsRegular clinical contact to monitor change and support decision making		Facilitate patient participation in decision‐making activity
Patient‐centred focus	Support for patient independence and autonomy Duty of care to patientProvide support services for carer	Incorporation of patients' beliefs and values Final decision rests with patient	Promote patient independence and autonomy Clash between patient autonomy and best interest
Timing and planning	Proactive symptom management based on anticipated disease course, evidence‐based information and clinical expertise	Respond to deteriorating symptoms	Respond to deteriorating symptoms
	Delay to diagnosis impacts negatively on patient and carer acceptance of condition	‘Wait and see’ approach	‘One day at a time’ approach (spouse carers) Actively planning ahead (adult children carers)
	Patients' impaired cognition negatively impacts on timing and quality of decisions and patient safety	Avoid dwelling on the future	Patients' impaired cognition negatively impacts on quality of decisions
Information sources	Need for more evidence‐based information Patients may lack discernment between credible and non‐credible information sources Manage patient expectations of unproven treatments	Source information from Internet, ALS services and carers Unproven treatments as source of hope	Source information from Internet and ALS services Find, assess, synthesize and filter health‐care information for the patient Distrust credibility of Internet sites
Engagement with specialized ALS services	Optimal setting for decision making Limitations to funding and resources restrict delivery of evidence‐based care Rapid response to change in patients' condition Relationship between health professional, patient and carer	Provision of expert care and disease specific information Opportunity for discussion of options Development of trust relationships with health professionals	Provision of expert care, information and discussion Development of trust relationships with health professionals
Access to non‐specialized services	Waiting times delayed implementation of decisions Gaps in communication and service provision between specialized and non‐specialized services impact on implementation Patient rate of deterioration may make decision redundant by the time it is implemented	Waiting times contributed to emotional stress Overwhelming number of service providers	Difficulties coordinating multiple service providers

ALS, amyotrophic lateral sclerosis.

The process of decision making

The decision‐making process encompassed the environment for decision making and the roles of participants. Stakeholders agreed that specialized ALS multidisciplinary clinics offered an optimal setting for decision making. Health professionals considered their role to be multifaceted. They strove to enhance patients' understanding of ALS and quality of life by providing information on symptoms and guidance on the options for management. Additionally, ALS specialist practitioners coordinated patient care with external service providers for implementation of patients' decisions and follow‐up care. The patients' role was to ensure clinicians were aware of changes to their condition and to actively engage with health professionals in decisions for their own care.

Participants held mixed views on the roles of carers in patient decision making. Carer involvement varied according to their individual circumstances and relationship with the patient. Patients and carers emphasized the active and necessary contribution carers made to patients' decision making.

It's always about listening to each other. Now, we're talking about whether or not I might need an electric wheelchair. We both know what we want, if we need to have one… I'm sure we've got exactly the same machine in mind. And when the time comes, if we have to have it, we'll hone in on that on that, and we'll get it.

(Patient)

Clinicians reported both positive and negative views of carers on patient decision making. Health professionals recognized the value of carer inclusion, yet expressed concerns about some carers' roles in decision making. Clinicians had encountered carer ‘gate keeping’ and patient–carer relationship issues that compromised the patient's autonomy or clinicians' duty of care to the patient. The effectiveness of carer involvement depended on individual patient–carer–clinician relationships.

I think sometimes the carer can be the barrier. That's interesting. “Oh no, we'll be right. I can do that”. But you can see that it's going to wear the carer down. The person with ALS can be the barrier too. They can tell the carer they still want that control, so that can stop the carer from accepting services. So it can work both ways.

(Health professional)

When patients and carers shared a commitment to participating in care, engagement between health professionals and carers positively contributed to the decision‐making process. Triadic decision‐making partnerships were considered to enhance patient‐centred ALS care.

Patient‐centred focus

Stakeholders agreed that patient autonomy was essential to patient‐centred decision making, with the responsibility of decision making resting with the patient. Carers and health professionals promoted and facilitated patients' autonomy, even while expressing concern that the patient's ability or motivation to engage in the decision‐making process was compromised. Patients acknowledged their desire for autonomy in decision making, balanced with the need for expert advice.

Client by client approach allowing, where possible the client to drive the process.

(Patient)

We know Mum well enough to know that we're not going to be able to force anything, any decision on her, so we've always kind of tried to leave it up to her, and help her and support her and maybe not even give advice, but just talk to her and say these are the options, and if she asks then help out. But even now, I still say to her “This is what we're going to do, but it's your decision”.

(Carer)

Always letting them know that we value, they're the most important person, that they're the ones that make decisions, that they're the ones who are in control.

(Health professional)

Timing and planning

Timing and planning were key, yet contentious, issues for effective and patient‐centred ALS decision making. Stakeholders agreed in principle on the importance of planned decision making. In practice, well‐timed decision making was difficult to achieve. Patient preferences for focusing on present circumstances presented obstacles to health professionals' aim of early discussions of symptom management and proactive planning. Delays arising from the diagnostic process compounded patients' difficulties accepting their condition and their wish to make treatment decisions. Health professionals' anticipatory planning was frustrated by delays created by service and equipment waiting times. Clinicians agreed on the importance of early discussions of symptom management, yet respect for patients' acceptance of the diagnosis and prognosis dictated the speed at which decision making could progress.

In my experience there have been people who've made really terrifically timely decisions, timely being very important and they've just gone along very beautifully, I think because they've had insight and they don't probably have the changes that come with the disease with some patients, in terms of cognition, and they've been very easy to deal with. You can feed them a bit of information and you come back and they are making sensible decisions. And then there've been others where I feel like you can drum it into them 50 times, and the decision doesn't happen. The decision that you're hoping for that really does relate to best care, and with those particular patients you always feel like you're running along after them, and trying to patch up problems.

(Health professional)

Patient‐centred care had to be delivered at the client's pace. This became more difficult if patients were not ready to engage in the decision process. While patients wanted information about ALS and the timing of their individual disease course, they were uneasy about reflecting on their future. Their discomfort was echoed by spouse carers.

We went together for the appointment. So I was, from the beginning, from the first symptoms, I was denying. I didn't want to believe that the final diagnosis would be what we had. Well, I think I am still in denial. So I don't learn very much about it, if I'm not looking forward.

(Carer)

This perspective differed from the views of adult children caring for parents. In contrast, they wished to work with health professionals to plan ahead.

We've also had a couple of family meetings with the support worker… and she's the one that got us to think about the beginnings of the advance care directive. And that was done really early on when he didn't look like he was dying at all.

(Carer)

Information sources

Patients, carers and health professionals agreed that ALS information was readily available from specialized services and the Internet, but that the quality of information from the Internet was variable. Even so, participant groups responded differently to accessing publicly available information. Health professionals preferred to limit patient's reading to evidence‐based and credible resources. Patients wished to consider all available information as a source of potential treatment or cure. Carers reported seeking and filtering this information on the patient's behalf. Stakeholders agreed that information sourced through the specialized ALS clinic aided effective patient‐centred decision making.

Gave me more confidence that I was making the right choice and that it would add to my quality of life.

(Patient)

Engagement with specialized ALS services

Common facilitators of patient‐centred decision making that resulted from engagement with the ALS multidisciplinary clinic included the following: access to evidence‐based information from the multidisciplinary clinic and the ALS association; regular monitoring of patients' symptoms; well‐timed service provision from specialized and non‐specialized services; effective communication between patient, carer and health providers; and collaborative approaches to care. Stakeholders valued the on‐going relationships that developed between patients, carers and health professionals and promoted patient‐centred care.

As a matter of fact, I've been thinking about sending an email to everyone, saying “Look guys, you mightn't realise, but you're doing a fantastic job”.

(Patient)

And gradually over a period of time, you'll find that people will become more accepting. Of course, I see them when they are here in the clinic as well, and that's always nice because that's sort of part of relationship building. And they appreciate seeing a face that they know as well. They come to the clinic, and I may or may not have met them prior to the clinic, but certainly if I have met them prior to the clinic then they've seen me, they know me, so … you can get closer that way.

(Health professional)

Access to non‐specialized services

Participants reported their experiences with health‐care services providing follow‐up care in their local community. These were general hospital and community‐based services, including neurology, gastroenterology, family physicians and homecare services. Stakeholders agreed on the challenges of coordinating multiple health services to meet patients' changing needs. Delays caused by waiting times, and difficulties identifying, contacting and communicating with external service providers added to the stress experienced by respondents.

It was a nightmare after it [percutaneous endoscopic gastrostomy] was done. I expected the … hospital to educate me in its use and care. Oh no! Nothing. I was fortunate a dietitian … came four days after it was done, realised the situation, and had the community nurse and the specialist stoma nurse here the next day. I haven't looked back since.

(Patient)

In addition, health professionals identified gaps in priorities between specialized and non‐specialized services. If patients with ALS were not prioritized, service delivery was not well‐timed for the patient care.

That would certainly help if we knew that when we put in an order for some really top end piece of equipment that it would come, because at the moment you can put in an order and it can take quite a long time … Sometimes when you put an order and it's about to come through in the next day or so you put your hands up and cheer, because you know it's going to make a difference to the family and to the patient feeling a bit more empowered.

(Health professional)

Patients and carers appreciated the support offered by their family physician, but reported having to continually educate new service providers and health‐care workers about ALS and the patient's changing condition. The challenges of access and information combined to delay decision making.

Model of ALS decision making

A model of patient‐centred decision making was derived from the findings and refined in relation to ALS and patient decision‐making literature (Fig. 1). The model represents stakeholder views on optimal patient‐centred decision making in ALS multidisciplinary care. Four interlinked stages reflect the dynamic nature of ALS, and the cyclical and complex decision‐making process used by patients. The model accounts for patients' movement within and between stages as they defer decisions, adopt a ‘wait and see’ approach or change their mind. At any one time, patients may have one or more decisions under consideration, reaching different stages of the cycle for each decision. Stages may occur within the timeframe of a single consultation or over a prolonged period.

Figure 1.

Model of patient‐centred decision making in specialized ALS multidisciplinary care.

The optimal decision‐making environment is the specialized ALS multidisciplinary clinic. Patients are referred to the ALS clinic following diagnosis. The clinic setting provides expert information; specialized patient care; continuity of care; and assessment and regular monitoring of patients' physical, psychosocial, cognitive and behavioural status. Change in patients' status triggers a decision‐making cycle and impacts on the type of decisions to be made and patients' capacity to participate in the process. Each cycle of decision making is distinctive due to patients' individual reactions to their continual deterioration, the increasing complexity of issues to be addressed and variation in health professional team membership. Regular contact between patients and clinicians promotes early and recurrent planning for upcoming decisions as patients' needs change. Health professionals endeavour to determine patients' readiness and capacity to participate, the timing of interventions and their resource needs. Working from the diagnosis, health professionals consider possible options in the light of the medical and psychosocial circumstances of the patient.

Stage 1 of the decision‐making cycle, ‘Participant Engagement’, identifies the participants in each decision. These may include the patient, one or more health professionals according to the nature of the decision, and carers and family members appropriate to the patient's situation. Where carers have significant involvement, participants establish a collaborative working relationship to support a decision‐making triad. An exchange of information occurs between participants to clarify preferences and values. Risks to the development of decision‐making partnerships include poor dynamics between participants, and patients feeling pressured to consider symptom management while still coming to terms with the diagnosis.

‘Option Information’, Stage 2, involves establishing the choices available to the patient and the optimal timing for each choice. Patients can be prepared for upcoming decisions by education about their disease phenotype, the markers for initiating symptom management and the timeframes surrounding these decisions. Health professionals' role is to ensure patients and carers have sufficient resources to make informed choices about evidence‐based and unproven treatments. Patients and carers who have sourced information discuss their findings with health professionals. As they access new information, patients, and carers, may loop through this stage to clarify their understanding of the options. Anticipated outcomes are discussed, along with patient and carer expectations. Decision support tools may be useful to explain risks and benefits of each option and the foreseen outcomes of taking no action. Risks to informed decision making include patients and carers placing false hope in non‐credible information sources, and changes to patients' cognitive skills.

In Stage 3, ‘Option Deliberation’, patients decide how they will proceed. While the limited range of available options may simplify choice of treatment, patients also decide between proceeding with a symptom management option, deferring their decision to a later time or choosing to do nothing. As they consider choices, patients may cycle back to the ‘Option Information’ stage to update their understanding. Carers support patients' decision‐making preferences during deliberation. Challenges to reaching a decision could arise from patients' cognitive and behavioural changes, such as reduced insight and apathy, or emotional responses to their condition. Prolonged deliberation may impact on the successful implementation of symptom management preferences, generating tension between health professionals' desire to maximize health outcomes, patients' readiness to make a decision and carers' wish to be supportive of the patient.

When a symptom management method is selected, participants move to Stage 4, ‘Decision Implementation’. Health professionals, patients and carers interact with specialized and non‐specialized services to put the choice in place. Patient, carer and clinician roles complement each other during the implementation phase, highlighting the importance of the triadic collaboration. ALS health professionals instigate referrals to internal and external service providers, and plan and coordinate the continuum of care. Carers provide logistical support to patients to coordinate appointments with service and equipment providers. Patients update health professionals on the success or complications of the chosen option. If a choice is unsuitable, patients may move through other available options or return to the ‘Option Deliberation’ phase to look at treatments not previously been considered. The decision cycle may be recommenced if the patient's condition has significantly deteriorated. Risks to the implementation of choices include inability to access to services, lengthy service waiting times and communication difficulties between service providers, patients and carers.

Discussion

Effective and patient‐centred decision making is enacted collaboratively by patients, carers and health professionals within the environment of the specialized ALS multidisciplinary clinic. This dynamic model extends established elements of patient‐centred decision making4 to address a health condition that features recurrent and overlapping decisions. It promotes a reflexive37 and collaborative approach to decisions that are ethically complex,22 and potentially averse to patients' philosophical, religious and cultural beliefs.43 The model draws on the principles of patient‐centred care,31 shared decision making2 and interprofessional collaboration44 to meet the changing requirements of patients with ALS and their families. It accommodates multiple and varying participants and can be used throughout the disease course for symptoms with single or multiple or management options. The strength of this decision‐making model is a patient‐centred focus, enacted in the service delivery environment of the specialized ALS multidisciplinary clinic. The model offers a unique contribution to the field.

The findings support previous work that reveals the complex and recurrent nature of ALS decision making.29 The nonlinear structure is responsive to patients' cyclical patterns of decision making and their evolving needs. It allows for change during and between decision cycles and stages. The model facilitates patients' adjustment to new deterioration as they choose a course of action.

Patient‐centred care is facilitated by carer inclusion.45 The formation of a decision‐making triad extends the principles of patient‐centred care applied in chronic disease management.32 Delivery of patient‐centred care in triadic partnerships with patients and carers may add pressure to health professionals' workloads in demanding health service environments. Nevertheless, clinicians valued carer involvement when it resulted in a productive partnership for care. Clinicians seek to remain true to the duty of care to the patient, while simultaneously involving carers in decision making.33

Further tensions exist between the competing priorities of delivering evidence‐based and triadic patient‐centred care.46, 47 What constitutes effective decision making from health professionals' point of view may not equate to the patient perspective. Practice guidelines recommend interventions and time points for implementation of symptom management,28, 48 yet patients' rights to refuse or defer a decision may result in suboptimal clinical outcomes. Patients set the pace of decision making and may respond negatively if they perceive that health professionals rush decisions for symptom management. Moreover, patient‐driven decision making can challenge carers and health professionals when patients lack acceptance and insight to their prognosis. These findings reflect the challenges surrounding diagnosis delivery and end‐of‐life care discussions for terminal conditions,22 and the disparity found between individual timing preferences of patients, carers and health professionals.49, 50

The timing of ALS patients' decisions cannot be rushed. This model supports patients and carers in the reflexive process necessary to accept and adjust to inevitable change. It accommodates the changing relationships between patients, carers and health professionals, including the development of trust that enables triadic decision‐making partnerships.37 However, the timing of the implementation of patients' decisions remains reliant on health service availability.18 Delays to service access and equipment provision impact negatively on patients' sense of well‐being and their ability to manage symptoms and maintain quality of life.50, 51

A limitation of this model is the restriction to specialized ALS multidisciplinary care. Despite the emerging evidence base of specialized multidisciplinary care,52 clinics may be unavailable to many patients with ALS outside metropolitan areas. Care is provided by non‐specialized services who may have limited experience with ALS.18 Multidisciplinary team care may be difficult to attain. Collaborations between specialized ALS clinics and local generalist services, using virtual modes of delivery, may improve patients' access to specialized care.

This triadic decision‐making model may be transferrable to other progressive conditions that feature limited treatment choices, but have significant consequences if a choice is not made. Testing across specialized ALS multidisciplinary care environments, and other health conditions, is needed.

Conclusion

Amyotrophic lateral sclerosis patient‐centred decision making is a demanding activity due to the character of the disease. Patient and family distress is balanced with health professionals desire to maximize patients' quality of life. This model captures these complexities and offers a framework for patients, families, health professionals, researchers and policymakers in this challenging environment. The model aims to optimize timely decision making, by promoting early and recurrent discussion of symptom markers, and time points for action within each stage of the cycle. Time constraints impact on the achievement of symptom management goals while maintaining patients' quality of life. Although the outcome of the disease is certain, patients' individual timelines and disease trajectories cannot be plotted. Health professionals strive to ensure patients reach decisions as efficiently as possible, while understanding that overwhelmed and grieving patients, and carers, cannot be rushed. The model provides a framework by which the triad of patients, carers and health professionals can enact patient‐centred care, incorporating patients' health‐care and psychosocial needs.

Source of funding

This research project was funded by the Australian Government Department of Health and Ageing, Canberra, Australian Capital Territory, Australia.

Conflict of interest

No conflict of interests have been declared.