Two overarching themes were identified. The first theme encompassed participants’ views on the pros and cons of ACDs and the 7-SP. The second centred around practical concerns about the integration of these documents into routine clinical practice in acute care contexts.
Advance Care Directives vs the 7-Step Pathway
Across the dataset, HPs consistently conflated ACDs and 7-SP documentation, conceptualising both as examples of an ‘advance care plan’. There were, however, discernible differences in their views on the role and value of each document. For example, ACDs were primarily valued as promoting patient autonomy and supporting quality of care, whereas the 7-SP with Alert Form was understood to promote clear communication between treating HPs.
Across disciplines, participants agreed in principle that ACDs constitute a valuable vehicle for patients to express healthcare and treatment preferences, and to support “quality of care as well as patients’ rights and … dignity” (ICU specialist). HPs saw the main value of ACDs as providing a means of initiating and scaffolding end-of-life conversations that may be otherwise difficult to broach and to document, while symbolically introducing the possibility of death as an outcome.
[O]ne of the first questions I’ve seen some clinicians ask patients or families is do you have an advance care directive when they’re broaching the subject of what the resus sort of wishes are. And if they don’t know what that is or if you know, you know they haven’t had that done before then that’s probably a good sort of way of broaching the subject at least. I think then things click that you’re talking about end of life. (Intern)
HPs agreed that ACDs can serve to communicate a patient’s “essential preferences” (intern) to inform care and treatment choices at the end of life. The nomination of a substitute decision-maker, facilitating a structured, timely process for the incorporation of family perspectives into treatment decision-making when patient capacity is lost, was also a perceived benefit of ACD completion. Ultimately, HPs saw ACDs a means of ensuring that end-of-life decisions are genuinely “about the patient” (social worker) rather than the wishes of family members or doctors whose inclination may be to keep “push, push, pushing” (nurse) unwanted, aggressive or invasive treatment options.
Despite these advantages, HPs reported a range of drawbacks of ACDs, including the observation that they are often inaccessible when required to inform clinical decision-making. When ACDs are present, HPs noted that they are often unfinished, which they attributed to the complexities involved in completing, witnessing, and enacting the documentation. HPs reported that documentation was more likely to be complete for patients coming from residential aged care facilities, which for some participants raised ethical concerns around influence, coercion, and capacity. For a number of HPs, the inclusion within ACDs of general values and preferences (“they’ll include things like ‘I want to die in my own bed’” – ICU specialist) rendered them “irrelevant” (emergency nurse) in the context of decision-making around specific care and treatment options in the acute care setting.
The 7-SP was specifically understood to be a well-known, accessible “case note for clinicians” (ICU specialist) that creates clear communication channels (nurse) between treating professionals. Participants indicated that the 7-SP orients to patient-centred practice, but also to resource efficiency and costs to both the system and individuals (“it’s designed to minimise resources, and [so we] don’t do something stupid to the patient” – oncologist).
A key drawback identified by HPs, however, was that the 7-SP/Alert Form, could often involve “reinventing the wheel” (social worker) in that a new conversation and documentation may be required for each acute admission regardless of whether another has been recently completed, or if an ACD is already in place. HPs indicated that this revisiting of difficult conversations can undermine rapport between patients and their current treating team.
Sometimes [patients will] be like, “I want everything,” and they start getting upset. I'm not going to be there at midnight in ED telling them, “No, we are not going to do CPR.” It’s just when the time comes we won't be doing that, and, you know, you ruin your rapport if you start doing that. (oncologist)
In some scenarios, HPs indicated that re-opening conversations previously settled in an ACD, in order to complete the 7-SP, can render patients vulnerable to pressure from family or others who may seek to influence established plans.
Families become very angry because mum or dad has an Advance Care Directive, and then we ask them to sit down and discuss again so that we can fill in the 7-Step Pathway, and then also distressed patients when their, particularly, sons and daughters don’t agree with their decisions that they made and they almost … try and bully Mum or Dad to change it (nurse)
To address these issues, HPs suggested that planning processes should be revised to enable an explicit combining of 7-SP and ACD documentation, or to enable the former, by default, to be ‘valid until revoked.’ The recording of 7-SP and/or ACD documentation on an electronic health record (e.g. My Health Record) was also broadly supported as a solution for some concerns.
‘Genuine, ongoing preferences’ vs ‘informed decision-making’
A key contrast between HPs’ understandings of the value of ACDs and the 7-SP was in terms of the tensions that could arise when seeking to ensure that decisions made in acute care reflect both a patient’s ‘ongoing preferences’ and meet the requirements of ‘informed consent.’ On one hand, decisions recorded in an ACD were understood to be ‘genuine’: completed when a patient is in good health, and full capacity, and without the immediate pressure, anxiety and potential ‘irrationality’ engendered by an acute admission. On the other, HPs indicated that the completion of the 7-SP on hospital admission more fully supports ‘informed decision-making’, in that clinical decisions require an understanding of the ramifications of treatment in light of a patient’s current health status, which cannot be fully understood or predicted in advance.
In this sense, some HPs indicated that ACDs should serve to inform the completion of the 7-SP, giving a general indication of the patient’s broader values (with regard, for example, to dignity, preserving life at all cost, etc.), while the 7-SP incorporates these notions into a care plan relevant to the specific admission. In contrast, the very specificity of the 7-SP (which can be recorded for use ‘indefinitely until revoked,’ but is usually recorded to guide care during a single acute admission, rarely leaving the hospital setting despite the policy intention that it should) was seen as a limitation by some HPs, who emphasised the need for a document that can continue to guide care in the community setting.
In the community, that 7-Step Pathway doesn’t exist and patients’ wishes ... do need to be documented in a more broad sense and particularly in the community where they have interaction with many health professionals and ambulance services and GPs and nurses …. there is a major gap (oncologist).
‘Static’ vs ‘dynamic’
In line with the above concern was a dilemma arising when ACDs and 7-SP forms were respectively characterised as ‘static’ versus ‘dynamic’. Although clinicians indicated the importance of patients’ communicating long-standing and ongoing preferences in ACD as a means of ensuring autonomy, there was also concern that ACDs might be completed too far in advance. For example, without ongoing revision in light of changing circumstances, it was argued that ACDs could potentially be rendered “useless” (oncologist) as disease progresses and physical and mental conditions change along an illness trajectory.
For example, HPs indicated that a one-time completion of an ACD document may not take into account issues around whether patients can provide or withhold consent for future treatments they are unaware may become relevant to their condition, the ramifications of which may not be possible to understand in the early stages of illness. Similarly, HPs suggested that ‘static’ ACDs cannot take into account how people will feel about their future treatment options if their perspective alters as their disease progresses or general health state deteriorates. By contrast, the 7-SP was viewed as potentially more dynamic and responsive to changes in the patient’s condition and prognosis.
The 7-SPs [are] dynamic. They can change. Do you want to put more in? Do you want to take some out? In the 7-SP you can. Did your circumstances change? And so, the risk … of having an ACD is you end up with these redundant, worthless documents where … your preferences around end of life are not what you want. (oncologist)
Integration into clinical practice
The thorough integration of the 7-SP and Alert Form into hospital clinical practice was argued to be its strongest advantage over ACDs. HPs reported that the integration of the 7-SP has arisen from systemic support, including the allocation of resources to education and training, which has seen resultant clarity among HPs regarding their roles and responsibilities in the completion of documentation and implementation of recorded plans. Although the 7-SP Policy Directive outlines “a role for all members of the health care team (p.8)”(10) HPs reported that 7-SP documentation is routinely completed by clinicians (“usually the senior doctor” – nurse) as a matter of priority within 24 hours of the acute admission. Across disciplines, HPs reported widespread understanding of physical and electronic systems through which the 7-SP Alert Form is completed, stored, accessed, and supported by an electronic system of alerts. Despite concerns about the accessibility of 7-SP documents between hospitals and across separate admissions, the 7-SP was generally understood to be vastly more accessible than the ACD, which HPs indicated is rarely completed, difficult to access when needed (being regularly filed with a lawyer rather than a relevant health practitioner) and often confused by patients with their will or financial documents.
Notably, across the dataset, there were instances wherein HPs demonstrated confusion around the legal standing of 7-SP Alert Form and ACDs, identifying areas of particular complexity when both documents were present, complete and clinically relevant. For example, some HPs argued for the prioritisation of the 7-SP over an ACD on both clinical or procedural grounds (“It’s informed by a member of the current treating team” – ICU specialist; “It’s hospital practice” – nurse), while others advocated the legal or moral precedence of the ACD (“It’s morally right to give it precedence” – nurse; “It’s a legal document, signed by a Justice of the Peace” – social worker). Other HPs claimed precedence should be given to whichever documentation was completed more recently, arguing that each completed document should supersede the last.
7-Step Pathway as ‘routine’
While the widespread awareness and use of 7-SP was deemed beneficial in supporting and scaffolding end-of-life conversations and documentation, the ‘routine’ nature of that documentation was reported to bring with it corresponding complexities. Indeed, some HPs indicated that the very principles underpinning the 7-SP policy—including patient autonomy and informed consent, as well as clarity of end-of-life decision-making processes and transparency between treating clinicians—were potentially undermined in a system in which 7-SP forms are expected as a matter of course.
For example, patient choice not to engage in end-of-life treatment/care conversations may be undermined by institutional/ colleagues’ pressure to complete the form, the first section of which requires a conversation with the patient.
... My biggest problem with the 7-Step Pathway is that the first box in that is ‘are they able to talk to you about it,’ and some can't or won’t because they have unrealistic expectations about what they want. And then for the next, you know, multiple days … all you get is constant hassles from nursing staff saying, “You need to fill in this form.” (oncologist)
This can be problematic in circumstances where there are questions around a patient’s capacity to engage in a rational decision-making process, perhaps owing to the stress of an acute admission or the trajectory of a patient’s disease.
They’re doing 7-Step Pathways … when they’ve got cognitive impairment, delirious, family are having big disagreements. It’s not necessarily what [the patient’s] wishes would have been. (social worker)
‘Clarity’ and the 7-SP
HPs agreed that the clarity engendered by writing a 7-SP can “stop the plan falling apart at midnight in the ED [Emergency Department] (oncologist),” but some indicated that particular professional skills are required of those expected to produce them while maintaining treating relationships and patient outcomes. An understanding of the role of the 7-SP, and of various professionals’ responsibilities to enact them, was considered essential in this regard:
[Other clinicians] need to understand that they can say no [to treatments for their patients], but they can’t demand. (ICU specialist)
Other ICU specialists highlighted the complexities involved when presented with ICU patients with care plans in which only limitations are clear:
[When we see other HPs’ plans] they are so incomplete. [The patient’s] not for intervention and not for CPR but if they then still come to us, what more can we do? (ICU specialist)
‘Transparency’ and the 7-SP
Significantly, HPs indicated that requirements to ensure ‘transparency’ of clinical care plans at the end-of-life through routine completion of the 7-SP can see this as the only means through which limitations to care, or conservative measures, are perceived to be legitimate.
Even palliative care [staff] sometimes will say, “You don’t have a 7-Step,” and it’s because it’s a complex discussion and … they want us to go there and force that [conversation] down, you know … . So, yes, the problem is that when it’s sort of forced that the [Alert] Form is the only way to have made this possible. (oncologist)
In turn, some HPs indicated that ACDs and the sensitivities of patients/substitute decision-makers may be overlooked, and clinical judgement around the complexity of end-of-life discussions potentially undermined.