This blog post is based on an extensive systematic review that generated a sound, theoretically-based model of person-centred rehabilitation. I can only develop some central themes and messages here. For more details, read the article. (here) The authors conclude that person-centred rehabilitation “is a way of thinking about and providing rehabilitation services “with” the person.” This approach is similar to my belief that “rehabilitation is a way of thinking, not a way of doing.”, a position set out in an editorial in 2002. (here) The authors emphasise that being person-centred applies at three levels: patient-person (dyad), patient-team (micro-system), patient-healthcare system (macro-system). They identify five features at the dyadic level, three at the micro-system level, and three at the macro-system level. The authors refer to their review as a scoping review, which implies early work, followed by the definitive work. I think this is a classic work. The research team took at least five years to complete it. They extracted data from 147 papers and consulted experts widely.
Why this matters.
Anyone reading what I write will know my interest in models and ideas applying to rehabilitation. Why does the way you think matter?
One afternoon in 1978, I ruptured a tendon in my left middle finger. At the time, I was a neurology registrar. A surgeon repaired my tendon about seven hours later, and my arm was in a plaster cast for seven weeks. I continued working. Seven weeks later, I saw the surgeon. We agreed that the repair had not succeeded. He referred me to a plastic surgeon I saw for about two minutes; he told me he would repair it. I was duly called into the hospital for the operation (as I thought).
The admitting doctor had no idea what was involved and later that Sunday afternoon I saw the consultant. He explained that I would have two operations over a week, staying in the hospital the meanwhile. Then after another few weeks, I would have a further operation followed by therapy (unspecified). The best outcome would have been a finger that would not fully extend and that would have active flexion of perhaps 40 degrees.
I declined the offer. He could not understand why. He felt he was offering a good surgical outcome, better than most other surgeons.
My interpretation was that he had not thought about me. I was working full-time, I had a young baby at home, I’m not too fond of hospitals (I had discharged myself from the acute hospital after 15 hours, most of them asleep), and he had no idea of what outcome I wanted or expected. He had thought of my finger as a surgical challenge. He was not alone. I attended the British Medical Association meetings as a training doctor representative and, at political meetings, two further surgeons noticed my finger and offered to operate on it!
How you think about a problem has a pervasive influence over all decisions and actions. “To a man with a hammer, everything he sees is a nail.” While this is an extreme example, it is depressingly accurate. A patient with osteoarthritis of the hip giving him pain and poor mobility was once referred to me by a general practitioner who wrote, “I am sorry to trouble you. I referred this man to [an orthopaedic surgeon especially interested in osteoarthritis of the hip], and he replied that he could not operate with no further advice.”
Within rehabilitation, the contrast is between people who think of rehabilitation purely as an intervention, something you do to, with, or for a patient and those whose model is more closely aligned to problem-solving, trying to understand what is going on and how they can improve matters. The former will focus on areas of professional expertise, offering specific interventions (see blog here), whereas the latter will focus on thinking around the problem.
I will now get off my hobby horse and consider this paper!
Why was the review needed?
The authors aimed to understand what patient-centred practice means in the context of rehabilitation. Their method was to identify as many studies investigating a patient-centred approach to rehabilitation. They aimed to develop both a theoretical, conceptual understanding of what being patient-centred means and, at the same time, an account of how individual rehabilitation professionals and their teams might practice patient-centred rehabilitation. This approach is similar to my approach to discovering what rehabilitation is (here) only they were somewhat more thorough!
They also knew no existing, clear conceptual basis for a patient-centred approach, referencing their protocol. (here) The biopsychosocial model does provide a theoretical, conceptual foundation for a patient-centred approach as argued in at least one paper, (here) the basis for another page on this site considering a patient-centred approach. Nonetheless, I think it is true that no conceptual analysis focused on being patient-centred within the context of rehabilitation existed.
Last, they observe that the rhetoric of putting the person at the centre of rehabilitation processes is rhetoric because there is much evidence that clinical teams are often not person-centred. They do not attribute this failure to the absence of a sound theory, but they argue that rational conceptual frameworks are vital to improving low-quality clinical practice.
I agree with this assertion. The presence of a valid, conceptually sound theory or model will (eventually) lead to processes that are structured around the theory. For example, if there was a clear prediction from theory that focusing on specific matters would lead to a more personal approach, then clinical teams could do than. Also, the theory might identify potential measures of how well a team centres their activities on the patient’s needs and wishes.
A whole system approach.
Patient-centred care is not solely a matter of the interaction between a patient and a professional. Care that is genuinely centred on the patient requires the whole system to focus on the person and their needs.
That may be the central message that this paper carries and the vital insight it gives. It is the logical consequence of the model derived that has three levels:
- the macro-system, the organisation the rehabilitation team works within
- the micro-sytem, the rehabilitation team that the patient is seeing and that the professional works in
- the professional-person dyad, the relationship between the person and the other person, the professional being seen at the time.
The original paper’s conceptual model, shown in figure 2 (page 111), is limited to the healthcare organisation (e.g. hospital, community healthcare service, even social services). Patients are inevitably involved with multiple organisations. The patient’s experience will only be patient-centred if every person and every organisation takes the same approach.
Thus their overview quotation needs adapting. I will use the word care to refer to all interactions between a patient and a person, team, or organisation seen about their illness. A better description would be as shown below.
“Person-centred care is a way of thinking about and providing care services ‘with’ the person.”
“Person-centred care can only succeed when all people, teams, and organisations responsible for working with the patient think in a person-centred way.”
Basing all analysis, planning and action on the biopsychosocial model is the first crucial step towards this Nirvana. The holistic biopsychosocial model increases the likelihood the rehabilitation service will see the patient as a person. (see discussion here) Furthermore, taking a holistic approach makes it more likely that a professional will ask about the patient’s wishes, goals, aspirations and interests. Thus, to achieve a person-centred approach, all professionals involved with people who are disabled (i.e. all staff in all healthcare and social service organisations!) must work within the biopsychosocial framework.
The second crucial state is for all services involved with people with long-standing disabilities (i.e. delivering rehabilitation including care) to work within a single, overarching organisation. (see here) Only in this way will an organisation-wide person-centred way of thinking become embedded into all organisations. Such a change would have many other advantages from a patient’s perspective, but, in the longer term, having all services more focused on the patient as a person with their own needs might be the most dramatic change.
Patient-centred features of
The authors of the paper extracted five main features of the relationship between a patient and a professional that, in their opinion, were central to a genuinely person-centred approach. I will list them here and then discuss each.
The five features as written in their paper were that the professional:
- is reflexive and adaptive to the situation at hand, not script-based.
- nurtures a supportive relationship: compassionate, trustful and caring.
- is focuseed on meanings, hope, and strengths; goes beyond addressing deficits.
- is collaborative, empowering and enabling, with co-constructed rehabilitation.
- is respectful of and tailored to the person, going beyond individualised interventions for the person.
We could use these five features to construct an excellent training assessment tool to identify how well someone training in rehabilitation (from any profession) interacts with a patient. This set of attitudes and behaviours must characterise excellent clinical practice in all areas of health and social care. Could someone please develop a training assessment which enables useful, constructive feedback to the trainee? Indeed, more senior staff would also benefit.
All healthcare and social care professionals should have teaching targeted at inculcating these five features into them from day one. They would transform all care.
Respectful of and tailored to the person
The crucial word here is person. This characteristic of person-centred rehabilitation emphasises the importance of the “culture of service focused on the needs of the whole person, not merely those arising from patients as objects of biomedical conditions and interventions.” and that everything needs to be guided by “the unique characteristics and circumstances of the person (perspectives, preferences, values, experiences, worldview)“, going “beyond consisting of individualised interventions addressing the impairments or symptoms of unique patients.”
Being respectful is the first feature discussed in detail, and it immediately emphasises the vital role that both team and organisational culture plays in achieving a patient-centred approach.
Adapt to the situation
“Patient-centred care cannot be fully guided, standardised, or dictated. Rather than merely being protocol-driven or a “1-size-fits-all” approach, it is antireductionist and adaptive to situations at hand.”
This quotation, hidden in the middle of a paragraph, gives the essence of this characteristic. Interestingly, it fits my concern that rehabilitation is losing its holistic, person-centred approach through developing specific programmes or treatment for particular deficits. For example, ‘upper limb’ (how I hate that phrase!) courses for people after a stroke.
The word, situation, must not simply cover the admitted considerable variation between patients in their specific clinical features, losses, and strengths; the rehabilitation offered must also adapt to their social context and culture, where they live, etc.
Compassionate, trustful, and caring.
“Patient-centred rehabilitation entails time for reciprocal interactions, conveying the professional’s personhood. Professionals use open minds and hearts to understand the person’s perspective, without fearing exposure to personal vulnerabilities.”
Again hidden at the end of a paragraph, this sentence conveys the crucial feature of “nurturing a supportive relationship. The behaviour signals very strongly to the patient that you, the professional, are also a person with a life outside your professional life.
It later says, “Open, honest, transparent, and reassuring communication may also securely unfold about interventions, unfavorable prognosis, recovery expectations, or slower progress.” In other words, once the patient realises that the professional is also a person, the patient is more likely to disclose matters concerning them and are more likely to expect and accept open, honest conversations in return.
This feature leads to a direct educational and training requirement. The professional needs to be taught how (and when) to disclose personal information, sufficient to establish personhood. At the same time, educators must teach them how to maintain a professional relationship. It is a skill we learn over time. We should teach how to establish this more personal relationship early, before the professional either gets into difficulty through giving too much or, conversely, becomes unapproachable and ultimately ineffective.
Meanings, hope, and strengths.
Patients often comment that rehabilitation teams repeatedly assess what they cannot do, what impairments are present, and how big their problems are. The team’s focus on failure upsets, mainly because no one pays any attention to what the person can do, what losses they do not have, and how well they achieve other activities. This criticism was undoubtedly a fair comment 30 years ago. I suspect it still is.
The professional should consider what purpose gives meaning to the patient’s life, in the past and now. A patient’s story illustrates the importance of sense. Joshua Lee and colleagues explored the importance of purpose and meaning in rehabilitation here.
In a person-centred clinical encounter, the professional encourages “supported self-explorations, as much as the person wants, to addressing issues such as one’s life story, situation, life goals, or occupational choices” because “This helps to frame impairments within a continuum of life changes, link one’s past and present to hopes for a meaningful future, and foster the person’s capacity to envision relevant life goals and agency-based paths toward their achievement.“
Being collaborative, empowering, and enabling.
The feature relates to goal-setting and shared decision-making which teams already use within rehabilitation. The authors highlight the need to see goal-setting and shared decision-making as flexible, adaptive and continuing practices and “not 1-off tick-box exercises“. It also emphasises that “meaningful changes are not necessarily numerically based but experienced by the person.”
The SMART method of setting goals is not consistent with this attribute. It is a one-off process, not an evolving and adaptable process. Moreover, it requires a fixed and scorable outcome that rarely includes the patient’s experience.
The other message is that the process involves the education of the patient about their condition and prognosis and negotiation with the patient as an equal partner.
‘Micro-system’, team-based features
The paper introduces a discussion of the microsystem thus: “Person-professional interactions occur within a microsystem, often involving significant others, multiple professionals, and support staff.” They imply that this system encompasses the people involved in their care, and I understand this to mean not only an identified, specific multiprofessional team but people from other teams, organisations, and the family, as illustrated in my diagram of the patient’s rehabilitation team. (here)
Thus, while the apparent people will be members of the patient’s multiprofessional team, all others involved need to be considered. The inpatient microsystem will include other members of the full service who may occasionally interact with the patient. Crucially, the inpatient microsystem will also include people from outside the rehabilitation team, such as a social worker or a diabetes specialist involved in controlling the person’s diabetes or a home care organiser.
When a patient receives rehabilitation at home, the micro-system will likely be larger and include more people from different organisations. In this situation, the importance of the macro-system also being patient-centred becomes obvious.
The authors identified three main characteristics:
- Inclusive of significant others
- articulated through a patient-centred rehabilitation (multiprofessional) team
- delivered in a welcoming and secure environment.
I will review each and draw some conclusions at the end of this subsection.
“Inclusive of significant others.“
I hope and believe that most rehabilitation teams already involve family. Fewer may actively involve close friends or other people of importance. The ‘significance’ of another person is a matter for the patient to adjudicate, where possible, and one must take care not to assume that blood relatives are necessarily the closest.
The text raises other points to consider. Where possible, the patient’s wishes for the involvement of any other must be established and, usually, respected. The team must be alert to family members using hidden persuasion or influences. On the other hand, the rehabilitation team must consider the impact of the patient’s preferred choice on significant others. For example, if someone wants to return home when the people at home cannot provide the care expected without risk to their well-being.
“Articulated through a PCR team.”
The authors did not describe this theme clearly. I am not sure if the authors mean the team should be patient-centred or that the input should be by a patient-centred team. They do discuss some suggestions, such as “all professionals who deliver interventions to the person demonstrate a shared commitment to PCR, listen to the person, and work toward common or articulated rehabilitation goals (beyond disciplinary-based agendas).“
“Delivered in a welcoming and secure environment.”
This characteristic of a rehabilitation service is self-evidently good. I do not think it relates directly to person-centred care, except that the absence of any effort to be welcoming suggests a service uninterested in patients.
The suggestion suggests that the authors consider rehabilitation as an activity that usually occurs to hospital inpatients. However, they do mention being at home as being good also “because of its homeliness, personally relevant aspects for rehabilitation can naturally emerge.”
Microsystem aspects – comment and conclusion.
The three suggested features that should apply at a microsystem level are all reasonable characteristics of an exemplary rehabilitation system. However, little of the content focuses on being patient-centred. I think, further, that applying the five features already identified for the patient-professional dyad to the ‘patient rehabilitation team’-professional dyad relationship would probably capture most of the features given.
Not articulated very forcefully, the crucial feature is for the patient’s rehabilitation team to have an embedded person-centred culture. And the vital part of this is that the patient’s team will usually include people who are not part of the multiprofessional team.
Macrosystem (Organisational level)
The authors do not give a clear definition of what they include – just the local organisation of the rehabilitation team such as departmental management, the broader organisation such as the hospital, the organisation of all healthcare, or societal organisation and culture? I will discuss this later.
Meanwhile, I will discuss the three attributes identified:
- Inclusive of persons and staff in service design, evaluation, and improvement
- Creating the context for person-centeredness
- Organized for continued, coordinated, and tailored services
Involving all interested parties in service management
I have adapted the original phrase to express what I think they meant more clearly. The authors describe obtaining feedback from patients and ‘significant others’ involved. They also represent involvement in service design and evaluation, not only clients (an interesting terminology change in terminology occurred here) and employed staff but almost all other groups such as researchers and managers.
As discussed about the microsystem, this certainly seems good practice, but it will not in itself influence how patient-centred a service will be. It may be a marker that an organisation is patient-centred, but only if any suggestions made by the assembled interested parties are listened to and acted on. Experience suggests consultation of this nature is standard, but equally commonly, the organisation ignores output. The activity ticks a box.
Creating a person-centred culture.
I have also adapted the original “creating a context” to a phrase that I believe is a more explicit and accurate reflection of the theme described. The authors state that the organisation should give “staff the means, opportunity, confidence, competencies, and accountability to deliver and improve PCR. Frontline staff need to feel safe, confident and supported to provide PCR“.
The authors then emphasise that “organisational leaders and managers need to show commitment to PCR approaches, beyond lip service.”. I think this is a key recommendation, and if this does not occur, all else will fail. They argue that organisations use an embedded, biomedical approach that militates strongly against a person-centred approach. They write, “it takes whole organisational shifts to move from service-centred, disciplinary-based “treatments” to PCR”
Their review highlights the need to train staff, who may not feel able to develop a personal relationship, for any number of reasons. Moreover, many people will think they are already very person-centred when not (as against the criteria given earlier). Third, the change is a challenge to many long-standing patterns of practice. Last, person-centred may be reduced to ticking boxes on a form rather than becoming more person-centred.
Ensuring long-term personal coordinated care
The third attribute is also essential. It is to organise services so that the person can maintain their relationship with the same team for as long as needed, rather than moving from service to service (however person-centred each service is). Services should be “designed to be coordinated and ensure continuity of care for the person to not feel abandoned after discharge from rehabilitation services.“
The central challenge is to reconcile a financial and managerial imperative to disintegrate all services into packages that they can measure and are of a predictable, usually fixed size with a philosophy of being flexible able to adapt to the specific needs and preferences of the patient.
The controlling management is fearful of loss of control, expecting huge costs. My own experience, supported by a few research trials, is that giving power to patients leads to less use of resources, not more.
Discussion and the way forward.
The article has proposed a new model as a framework for understanding person-centred rehabilitation, describing its key features. It develops some new (to me) ideas and suggestions that could significantly improve rehabilitation. The paper puts forward two vital new ideas.
Two new insights.
The first new information is to list attributes that will, if present, indicate that a truly patient-centred approach is likely to be present. This list of features concerns the patient-professional interaction. The list of features is, I think, new, and someone should develop an observational tool based on it that will allow an analysis of how patient-centred a clinician is. Someone should also develop training in being person-centred, centred on the five attributes.
The second, and in my view, more significant novelty, is an insight into the factors that determine the success of any single professional being patient-centred. The researchers have shown, in my view convincingly, that a patient will only receive patient-centred rehabilitation if every organisation responsible for delivering any service to a disabled person makes being patient-centred the central goal of all their work.
Two conditions to achieve success
Therefore, person-centred care will only happen if two conditions are met. That is the only conclusion I can draw, assuming the model developed in the paper is valid.
The first condition is that each professional rehabilitation engagement with the patient has the five attributes set out, and the professional adheres to the five characteristics in all interactions. Although the attitudes and behaviours needed may not be universally present in all rehabilitation staff, I think achieving this condition would be quite achievable.
The second condition is that all organisations involved with a patient’s rehabilitation need to have a patient-centred approach embedded in their culture, from the most senior executives to the newly joined junior assistant in an office. To make this clear, this:
- includes any organisation that provides rehabilitation, however the service is actually named (see here for a list of common names used for rehabilitation services)
- needs to be lead from the very top of the organisation
- needs to be embedded in all policies concerned with patients
- includes all intervention with disabled people including provision of equipment and delivery of personal care and support
- must include the ‘front-line services’, the people and the teams involved
Is the framework valid? The evidence used to develop it is substantial, though this does not prove validity. I think the most robust evidence of reality is the observation that almost all attempts to improve patient-centred care have failed. And none of the attempts has tried to change a whole organisation.
Most of the remaining attributes identified are good attributes of good service but are not specific to being patient-centred.
Organisations are unlikely to establish being patient-centred as their central value immediately. Organisations who intend to deliver patient-centred services do not look at every policy and decision to ask, “Is this decision focused on delivering a patient-centred approach?”
We can start the process. I make a few suggestions.
- The individual clinical attributes can be taught to all healthcare staff, and they can be trained in the skills need to succeed.
- an assessment tool should be developed based on the five attributed to assess how patient-centred a professional is and to give constructive feedback on performance.
- expert multi-disciplnary teams can discuss how each member can learn the skills needed, and then how the team can be more patient-centred in its own policies and procedures
- the managers of rehabilitation teams can be educated in this model and the biopsychosocial model of illness, because it is central to patient-centred care