Rehabilitation is a reiterative process and must include a review of the effects of any interventions. Furthermore, the rehabilitation team and the patient should always consider when a rehabilitation episode should end and what services or support they may need. Just as students in education eventually leave an educational environment, there comes the point when the rehabilitation patient must start to live outside a rehabilitation environment. But, just as education often continues as a part of life in some form for many, further involvement of rehabilitation experts should remain an option after leaving. Full-time rehabilitation is a stage, and even within that stage, the person may move from one service to another just as students move from one school to another. (See discussion of analogy with education (here.) This page considers evaluating a patient’s progress and the decisions that you might consider making.
Rehabilitation is a problem-solving process, and the complexity of many rehabilitation problems means that one cannot know that an intervention will be effective. Moreover, the process may last weeks, months or even years. Under these circumstances, a formal review of progress is essential to avoid wasting time and resources on ineffective or harmful interventions and to check whether the formulation and the plan remain correct or need adjustment.
Most healthcare uses a problem-solving approach, but rehabilitation differs substantially from other healthcare types based on a biomedical model of illness. In the biomedical model, there is usually only one active intervention targeted at the disease or abnormal physiological process. There is also usually only one measure of effectiveness, a physiological parameter. The effect of the intervention is generally relatively quick, being seen in hours or days, and there are few or no other factors that affect the outcome. These features make monitoring the specific effects of most medical (pharmacological) and surgical treatments relatively straightforward. The decisions are also quite simple; carry on, maybe adjust the dose, or change to another specific treatment.
Within rehabilitation and the biopsychosocial model, the situation is quite different. We use multiple interventions simultaneously rather than a single intervention. We target many various factors at the same time. Many factors may influence an outcome, including many that are not the target of any intervention. The effects cover several different domains (function, symptoms, social). And, because the relationships between various interventions are complex and challenging to predict, it is much more difficult to decide what to do and measure the effect.
In many cases, the rehabilitation process involves a team of several people, each having their area of expertise. A single person can rarely undertake a review of change and progress. Even if one person can collect the review data, the (re) formulation and the planning process will require input from many people.
Third, the choices are much more complex in rehabilitation. Rarely is the decision simply one of continuing or stopping an intervention. Decisions may need to consider transfer to different services, what accommodation might be suitable (or available), whether to stop rehabilitation etc. Sometimes the decisions can be ethically or legally challenging, for example, judging what level of risk is acceptable, what someone’s mental capacity is, or whether to stop life-sustaining treatment.
I have already covered the processes of assessment and data collection, formulation, and rehabilitation planning. On this page, I will discuss in a bit more detail how to judge the benefit or measure change and then the tricky issue of transferring the patient, including discharge.
Evaluation at a review.
At a review, the rehabilitation team needs to evaluate progress toward the goals set initially. They may use goal attainment scaling (often referred to as GAS) to assess change, but I have argued in a blog post that this is not an appropriate measure; the team might use goal attainment scaling to detect progress but not measure it.
While one should assess progress towards previously specified goals, one should look more broadly for change. When planning, most people focus on setting specific goals that can be measured and avoid setting goals that they cannot measure. Avoiding setting goals in areas that are difficult to measure may result in a failure to detect crucial changes, and it is worth remembering what the originator of the SMART goal said:
“In certain situations it is not realistic to attempt quantification particularly in staff middle-management positions. Practicing managers and corporations can lose the benefit of a more abstract objective in order to obtain quantification. It is the combination of the objective and its action plan that is really important. … the suggested acronym doesn’t mean that every objective written will have all five criteria.“George T Doran. 1981
Significant changes may occur in other ways. Sometimes an intervention may have an unexpected effect, or the resolution of a minor problem may substantially impact the person’s mood or engagement. Often time alone may allow the person to change, perhaps suddenly realising that previous aspirations are no longer possible. When we started goal setting at the Rivermead Rehabilitation Centre, we observed that many patients and their families improved simply due to the discussion around goals and plans. They said setting goals gave a much more concrete reality to talk about improvement. Sometimes it made the patient realise that recovery would be more than they had expected, and at other times it made explicit that the recovery wanted was not achievable.
Not all changes will be positive, and it is equally important to consider and be alert to unexpected worsening, which may arise from new or worsening disease, as an adverse effect of an intervention, or because of some change in external circumstances such as family stress.
Therefore, a brief and targeted reassessment is usually required, covering all major areas of interest, including checking on any developments in external circumstances – family, housing, employment etc.- and recording any new events, such as having an epileptic seizure.
Review of formulation and goals.
At any review meeting, it is vital to consider the previous formulation, especially if there have been unanticipated changes or significant new events. While a large shift in a formulation is uncommon, it is not unusual for relevant and sometimes crucial differences to arise sufficient to alter the longer-term goals or render a previous objective unnecessary or unachievable. Therefore one should always formally review the formulation, explicitly confirming or revising its primary content.
Similarly, one should always review and revise previous goals, starting with the higher-level long-term goals covering, for example, accommodation, social roles and other matters the person has identified as priorities.
The patient may have achieved some goals. If no further progress in that area is possible or needed, the team can remove the objective. More often, further progress is possible, and you will need to discuss whether it is necessary and desired by the patient, who might be content with the progress. Sometimes you will only need to teach the patient how to continue improving through practice.
The patient may have made progress towards some goals, in which case you will need to consider whether further improvement is possible and, if so, whether it is worth the effort and of sufficient importance to the patient. As above, you may only need to teach the patient how to continue improving without any other ongoing direct involvement with the patient.
If the patient and team have made no progress, you need to consider why this is the case:
- the intervention was undertaken and is ineffective?
- the intervention was not given or was given at an insufficient level?
- the patient was not interested and did not participate?
- change is not possible for some other reason?
Then you need to discuss your explanation with the patient and consider whether other interventions are possible and worth trying, whether the team should abandon the goal, or whether an alternative plan to meet the underlying need is possible.
Last, considering all changes and events, you must consider whether some completely new goals are required. For example, if someone’s house has been visited and found unsuitable and unable to be adapted sufficiently, you will need a plan to discover new accommodation.
Needs: rehabilitation, medical, care, social
The remainder of this page focuses on the transfer process from a rehabilitation service, either transfer to another service or care placement, or discharge from active involvement with any rehabilitation service. This process is not always carried out very well. I show the critical points in this graphic.
The team responsible for a patient must consider a transfer from the first day, even if initially it is uncertain precisely what transfer may be needed. In the majority of cases, only two or three possible transfers will be likely, and work may need to start in preparation long before the transfer arrives.
The team should consider four classes of need for the patient whenever contemplating a transfer or discharge.
The first is the patient’s rehabilitation need. This need covers direct, face-to-face therapeutic practice and learning (i.e. therapy as usually understood). More importantly, the requirement covers having unimpeded access to the rehabilitation team’s expertise over time. The patient may need rehabilitation expertise to resolve a new problem, monitor for avoidable complications, train carers in the specific care and support required, or advise on practical activities and many other matters.
The second is their care need. This need covers, obviously, the nature and extent of direct assistance with, or undertaking of, all personal activities of daily living such as washing, feeding, toileting and dressing. Less obviously but equally important, it includes assistance with domestic, community, and social activities as appropriate. It also covers advising on and, sometimes, organising a suitable environment. Rehabilitation teams usually consider the physical environment, but the social and temporal environments (routines and structures, and availability of activities to fill time) also need consideration.
The third is their medical need, the need for medical expertise to manage the disease, give any ongoing rehabilitation medical input, such as drugs, and support the care and rehabilitation teams when new potential medical problems arise. Although much of this will be well within a General Practitioner’s range of practice, not all will be, and easy access to a doctor with rehabilitation expertise is vital.
The fourth is their social need, their need for the level of social contact and interaction they want. Some people wish to take part in many social activities. Others do not want any. Tailoring social connection to a person’s preference is essential, particularly but not only when considering a transfer to a long-term care home or new accommodation in the community. It concerns loneliness, which is discussed in more detail here.
The critical question to consider initially is, “What will this patient’s continuing rehabilitation and care needs be when they have progressed as far as they can in our service?“
The next question is, “What service or services might be able to meet the identified needs?“. The clinical team should later, before the transfer occurs, ask two more specific questions,
- “Can the proposed next service meet the patient’s rehabilitation needs adequately (not necessarily perfectly)?” and,
- “Can the proposed service meet the patient’s care needs sufficiently to maintain their safety and well-being, including both bodily and psychosocial well-being?“
The answer to the final question will determine the transfer timing: “Will the next service meet the patient’s needs at least as well as the current service, if not better?“
Sharp-eyed readers will notice that I have not mentioned money, but it is a factor. Moreover, equity (justice) also has to be considered. Equity means asking, “Is it just or fair to continue with this patient, given that other patients might benefit from using our service?” For example, if another four weeks might, or even definitely would, give the existing patient a 3% increase in something, it might not be fair to someone who would gain a 10% increase over the same four weeks.
In general, though not always, the next service will cost less. Moreover, increasing priority should be given to a patient’s social engagement and activities as time progresses. These are usually limited in a predominantly rehabilitation setting. The problem that often arises is that the funding organisation will not adequately fund social engagement and activities in the community or long-term care.
The primary transfer destinations to be considered are as follows:
- An inpatient medical setting. This is relatively rare and usually only occurs in an inpatient rehabilitation unit. Moreover, this is rarely the planned transfer, and it usually arises as an urgent transfer. Nevertheless, the transfer process should follow the principles outlined later, as far as possible and usually after the event.
- Another more specialised rehabilitation setting. This is also relatively rare but does arise in two circumstances. A patient already in an inpatient unit and a sudden-onset, usually neurological disorder may become more mobile and more emotionally or psychiatrically disturbed such that the team meets neither the care nor the rehabilitation needs. Second, a patient with a progressive, also usually a neurological disorder, being managed in the community may develop needs (care and/or rehabilitation) that the district serves can no longer satisfy safely.
- Another less specialised rehabilitation setting. There are relatively few inpatient rehabilitation settings, so this transfer is relatively rare. One important consideration would be whether other benefits can justify the inevitable disruption in and associated prolongation of rehabilitation.
- A long-term care setting. This is not uncommon, both from inpatient units and from community rehabilitation services. The usual large deficit is providing any access to rehabilitation expertise once the transfer is complete. This lack is iniquitous. Social support is often limited.
- A community setting is usually the patient’s home but sometimes with someone else. This might involve:
- with planned rehabilitation, given in an out-patients department or day hospital, or provided at home by a community rehabilitation team;
- no planned rehabilitation, but under the general practitioner’s care and with usual access to community services.
When a team arranges a transfer, it is essential to ensure a complete and proper transfer of information and, if necessary, training of the following service in the management of any clinical problems which require an approach tailored to the patient. This training includes practical matters, such as how to transfer a patient into their wheelchair or position someone at night, and behavioural issues, such as responding to aggressive or socially inappropriate remarks.
The distinction between discharge with easy availability of further rehabilitation input and ongoing so-called ‘slow stream rehabilitation is arguable. Funding organisations usually require it. The patient and the care team should be able to access rehabilitation advice and expertise when needed. Further, if they think it necessary, the rehabilitation team should monitor the patient’s situation and care provision at intervals.
The artificial distinction between a patient having or not having rehabilitation is similar to the manager’s situation. The manager attends continuing professional development activities and is appraised regularly, and both are educational activities, but the manager is no longer ‘in education’. The patient is no different concerning rehabilitation: they need an appraisal from time to time and may benefit from intermittent rehabilitation input.
Delays in the transfer process.
Rehabilitation teams, hospital managers, patients, relatives, healthcare commissioners, politicians, and the general public all complain about delays in transfers of patients to a more suitable setting. This includes transfer from an unsuitable acute medical or surgical environment into an expert rehabilitation setting and the transfer out of an expert rehabilitation setting to some other location. Indeed, it often applies to the whole pathway with delays at every stage.
Many factors contribute to these delays, and most arise from the low priority and level of resources given to rehabilitation. These factors include:
- fragmentation of services into many small services in different settings with different criteria and
- an associated fragmentation of commissioning and funding with different rules
- artificial borders between health and social care, which are associated with radically different funding streams and rules (healthcare is free, social care is means-tested)
- absence of commissioned expert rehabilitation teams in the acute services;
- they have therapists who have to focus on discharge, not rehabilitation
- the lack of any mechanism to improve collaborative working across the multiple boundaries
- the pressure on all services and staff to discharge, coupled with
- the lack of staff time to attend to any complex problem (many transfers are complicated)
I have discussed these issues in several blog posts and will not discuss them further:
- Ready for discharge? (here)
- Rehabilitation: a social service? (here)
- Nursing home rehabilitation. (here)
- Help change rehab. (here)
Summary and conclusion
On this page, I have considered how the rehabilitation cycle ends with a transfer of a patient either to another service or, in the end, to be independent of ongoing attention from an expert rehabilitation service. I have set the process in the context of evaluating the impact the team has on the patient. I have set out some principles that could assist in planning a transfer, ending with a brief discussion of why the transfer process is so haphazard and slow.