Abstract
Aside from some of us who die suddenly, most of us will, at some point, suffer a disabling illness, where cure is impossible and hospice premature. 1 We encounter, perhaps for the first time, rehabilitation services, but often without much understanding of what’s intended for us by use of the term “rehabilitation.” 2 Commonly, services have tended to park the question, simply designating themselves by biology (eg, cardiac, pulmonary, neurological, spinal and cancer rehabilitation), biography (eg, paediatric and geriatric rehabilitation services) or base (eg, critical care, post-acute and community rehabilitation). Even attempts at defining “rehabilitation” itself – for example, as the optimisation of functioning to maximise independence and flourishing – may feel lacking in some aspect. After all, when newly disabled, people may need not so much to be told its meaning, as to be shown.
This editorial offers a different classification for rehabilitation services, one that may be of help when considering service design and staff mix, because it derives from the coal face of clinical practice: the ethical relationship between staff and patients. For simplicity, that spectrum of therapeutic relationships can be condensed into 3 categories: paternalistic, shared or autonomous. Paradigmatic examples of each of the 3 follow. First, rehabilitation services for people with persistent disorders of consciousness (PDOC) are, initially at least, paternalistic – seeking to care and treat on a best interests basis. 3 Second, for people who need the problems and uncertainties of their medical condition to be better addressed in order to refine treatment and regain the confidence to optimise their functioning, shared-decision-making (SDM) is preferable and medical rehabilitation plays a key role.4 -6 Examples arise within cardiac, pulmonary, musculoskeletal (MSK) and sports rehabilitation. Third, for people who know what needs to be done but need motivation to do so and the morale to cope, Alcoholics Anonymous exemplifies autonomous, often group-based rehabilitation. 7
Staffing for the first example needs to focus on hands-on delivery of all cares, serial assessments, plus treatment of dysfunctions, ranging from gastrostomy-feeding and bladder catheters to tracheostomy ventilation. Multi-disciplinary teams (MDTs), including physicians, will provide substantial care for the body while often having more limited opportunity for rehabilitation of the self. In the second case, medical rehabilitation comes to the fore, seeking to address cardinal uncertainties via SDM to support, in time, transition to either an autonomous model, in notionally static conditions, or a palliative approach in degenerative ones. In the third case, healthcare staffing needs are lesser or non-existent. Fellow sufferers know what needs to be done and how to support one another to rehabilitate. Broadly speaking, if we enter rehabilitation services as patients, we’ll be done to, done with or we’ll do it ourselves.
Inevitably, as with any attempt at taxonomy, there are some complications to consider. Therapeutic relationships may vary over time depending on variations in the underlying condition and psychological recovery too. Stroke rehabilitation can see great dependency and initial paternalism give way, in time, to shared and later autonomous work. Secondly, the therapeutic relationship may be determined also by external factors. The Covid pandemic illustrated how readily this can happen. 8 Similarly, routine bed crises can frustrate shared work, pressing instead for paternalistic measures to expedite hospital discharge. 9 Medical rehabilitationists, while skilled at SDM, may feel constrained to re-habitate (re-home) rather than rehabilitate. This can create tension within the MDT, given that other members are also skilled at swiftly getting patients home. At the same time, it means patients may be returned to the community with unfulfilled needs for a SDM approach. Such community services, often led by nursing and allied health professionals (AHPs), carefully seek to understand “what matters to you” (WMTY) for each patient. 10 But this approach can founder when “what matters to me” most are myriad uncertainties arising from “what’s the matter with me.” Hospital discharge summaries, if written to patients, can address some of the shorter-term uncertainties that open up in a busy and stressed hospital setting. But as that “fog of war” clears, patients are commonly still looking to understand what their medical conditions mean for life ahead. Here, medical rehabilitation comes to the fore, offering counsel and SDM en route to autonomous or palliative models. 6 And there is room for overlap: aspects of SDM can feature even in largely paternalistic models, when taking into account for example, medical discussions of PDOC and prognosis with concerned family.
What does this mean for service design? In more stereotypic pathways, such as some stroke or spinal services, all 3 models may be supported, from initial hyperacute care of the injured, even ventilated patient, all the way to semi-autonomous community groups. Elsewhere, for example, in traumatic brain injury, increased focus on prompt hospital discharge means that services may opt to prioritise pathway based, AHP-led re-habitation (“what we need you to do to get you home”), at the expense of SDM within personalised medical rehabilitation. The latter shared approach may fall increasingly to community services, historically under-resourced for such work. For other, less physically immobilising, but nonetheless life-changing conditions, getting home/re-habitation is less challenging, meaning most of the opportunity for rehabilitation sits routinely in the community. Cardiac and pulmonary rehabilitation services exemplify this, taking often an MDT approach, usually with support from physicians in the relevant specialty or dedicated rehabilitation physicians. Conditions that are chronic and community-based, such as MSK ones, have often devolved, in the UK at least, to combination of GP and physiotherapy. But rehabilitation physicians should play key roles, particularly when regular pathways have not sufficed and what’s required is complex diagnosis and intervention within a SDM framework.
Given their cost within such services, it’s worth clarifying the physician’s role in these models. Key is the diagnosis and treatment of symptoms that can be simplified into 3 categories: pain, change of function and uncertainty. The latter is more future-orientated. It includes fears of demise reflected in disabling anxiety and loss of confidence, plus shaming self-doubts about whether we can go on like this; these are often rooted in understandable misconceptions of the medical conditions and their prognoses. 6 Algorithms and pathways can see nursing and AHP colleagues address some aspects of these symptom categories. But physical and rehabilitation physicians (PRM) can help reduce the “cost per decision,” able to reach resolutions across varied issues without needing so often to refer / signpost to other specialists or MDTs. This efficiency comes into its own in the context of multi-morbidity and long-term conditions. Experienced GPs will share some of these skills, even if also declaring that certain rarer conditions fall outwith their knowledge base and are deserving of specialist PRM support.
In conclusion, by categorising rehabilitation services by type of ethical relationship – paternalistic, shared or autonomous – we can obtain a clearer view of the staffing mix and required service design. In addition, this classification highlights how the push for prompt re-habitation/hospital discharge may change neurorehabilitation, increasingly decanting unfinished SDM work into community settings. This can then leave physician-less community teams struggling to respond when “what matters to me” most of all remain the uncertainties emanating from “what’s the matter with me.” Rehabilitation physicians can support the necessary SDM work, particularly where complex physical disability and rarer conditions create substantial uncertainty for GPs too.
