Resolving complex clinical cases.
I am asked to provide second opinions when the local team has difficulty, usually when the patient and family disagree with the rehabilitation team, or there are disputes about funding more rehabilitation. I enjoy the challenge and typically find a way forward. This post is my reflection on how I approach challenging and complex cases. I rarely make an undiscovered diagnosis or know of any untried successful treatment. I have the luxury of time and an absence of any preconceptions. Typically, difficulties arise from differing views on what rehabilitation is and what it can achieve coupled, almost universally, with a failure to consider long-term, social, and personal outcomes. A commonly associated challenge concerns funding. Everyone takes a binary position on rehabilitation: either the patient needs 100% rehabilitation, or they do not need any. The funding system fails to encourage sharing and collaboration, for example, by allowing carers to supervise a patient who is practising dressing to become independent because “that is rehabilitation and social services do not pay for a health intervention.” In this post, I consider how I assist others to reframe an apparent impasse and find a way forward.
Table of Contents
Introduction
Challenging and complex clinical cases
Most professions and individuals within a profession believe their expertise is invaluable and benefits the recipient, the client. This is natural and is usually accurate, although the extent of benefit may be less than the profession thinks. Moreover, most people outside the profession hold a similar opinion about the profession, although a few people will hold strongly contrary views. In rehabilitation, the team members will consider that their expertise is invaluable and that the team’s rehabilitation input is of great benefit.
However, professionals and teams risk overvaluing the importance of rehabilitation. They may consider the difference they make to an outcome to be more extensive than it is. Secondly, they may overestimate the change’s effect on the person’s life, functionally and in meeting their prioritised goals.
The professionals and teams, patients and families, and those who manage or fund rehabilitation frequently make a further, more subtle but critical mistake. They concentrate on the therapeutic effect of one-to-one or group therapy and overlook the many other rehabilitation interventions.
Moreover, they fail to appreciate that active and continuing input from rehabilitation is only part of the patient’s needs and that this longer-term, lower-intensity component of rehabilitation is arguably more critical than the traditional sessions of therapy.
These misunderstandings arise because most people still conceive of rehabilitation as a biomedical intervention rather than as a much broader and quite different biopsychosocial intervention. The biomedical model assumes that treatments cure or at least control a malfunction, leading to an improvement for the patient. Some rehabilitation interventions will indeed reverse or control some specific malfunctions, but many are radically different.
I will consider two general solutions to these inter-related misunderstandings, and the resolve other complex clinical cases. They depend on the biopsychosocial illness model and the General Theory of Rehabilitation. They both depend on broadening the scope of your:
- attention from the patient’s immediate situation to their long-term aspirations and contextual factors, and then facilitate their adaptation to the consequences of their illness;
- rehabilitation from short-term patient-centred interventions, mainly aimed at improving function, to encompass broader and longer-term person-centred actions that facilitate adaptation through educating the person and their family or carers, improving relevant contextual factors, and facilitating goal adjustment if necessary.
Embed biopsychosocial thinking.
Although rehabilitation professionals are all aware of the biopsychosocial model and profess to use it, in reality, the biomedical model still has an unconscious but pervasive influence on most thinking. This is inevitable, given the long-standing societal dependence on biomedical thinking; it is the most influential cultural aspect of most developed and developing countries, a constant across cultures that differ in most other elements.
I acknowledge the challenge; I have been advocating the biopsychosocial model for 40 years, yet I still frequently think or say things that are based on a biomedical approach. One must consciously and explicitly reconsider one’s model when faced with complicated cases or decisions.
One approach to embedding biopsychosocial thinking into team clinical practice is to structure and document the initial formulation explicitly using the biopsychosocial domains, especially their personal context, hopes, and priorities.
This simple technique may simplify complex clinical cases by drawing attention to factors easily overlooked.
Explore the person’s hopes.
Although professionals involve patients in goal-setting, they rarely thoroughly explore the person’s long-term hopes. The involvement is genuine but superficial, often presenting one or two options and asking if one is acceptable. Crucially, the outcome is not considered in the context of the person’s anticipated future life. For example, a person who is going to live in a nursing home might prefer to learn how to use a wheelchair well rather than learn how to take a few steps with supervision.
The goal is to understand the person’s priorities in their expected life after stopping rehabilitation. One is interested in their aspirations, things they like to aim at with no great expectation of total success. Indeed, their characteristic is that they can never be fully achieved.
There are many ways to achieve this, depending on the person and the professional. Maslow’s five domains of motivation offer one framework. One could discuss the person’s main areas of need and how feasible they might be in the future before moving on to discuss modifications. Dekker developed a different, structured approach for inpatients with severe disabilities. Another suggestion is to ask what purpose the person sees in their life.
Another way to find out is to ask the person about their hopes. I discussed hope and goals in an earlier post, and this takes it further. This discussion draws on a recent PhD thesis by Leisa Aitken, published at the University of Sydney. It reviewed concepts of hope extensively, formulating a new description of Common Hope; its title is Common Hope: A New Hope Conceptualisation and Psychometrically Validated Scale Informed by Interdisciplinary and Historical Perspectives and Explored During the COVID-19 Pandemic.
She argues that Common Hope has four components: belief in meaningful possibilities, affect-inducing glimpses, latent agency, and external agency. In goal setting, one must understand the person’s meaningful possibilities, which are usually “deeply important, altruistic or even transcendent”. Possibilities are generally ill-defined and not inevitable or even likely. They reflect the “belief that the future has a capacity for meaningful possibilities”, which “could be internally perceived as a narrative stretching into hoped-for futures.”
The purpose of the discussion is to move from possibilities to the capabilities the person needs to move towards that possibility, as well as any significant contextual factors that can be achieved or altered. A capability is a person’s ability to undertake an activity.
Another more direct approach is to ask the person or a close family member or friend what they envision their situation in five years:
- Where will you be living?
- Who will be living with you, if anyone?
- What will you do during the day once you are up and dressed?
- Who will you see regularly and be able to ask for support?
- What will be most important to you:
- Of the things you might be doing?
- Of the people you might be seeing?
A second method is to establish their life history before they fell ill, exploring their choices to discover why they made them; this might reveal their broader life goals.
Whatever approach you use, you could cross-check what you learn against Maslow’s five areas of need. Not all will be relevant to each person, but each should be considered:
- Basic needs: how they will get food, eat, keep themselves clean, etc.
- Safety: where will they live, and what support can they call on if needed?
- Affiliation: what will their social networks be?
- Self-esteem: what purpose will they have in their life (e.g. supporting their family)?
- Actualisation: Are they pursuing some intellectual, social, or moral aspiration?
Consider the whole scope of rehabilitation.
Spinal cord injury rehabilitation is a dramatic illustration of the power of rehabilitation, transforming lives between about 1935 and 1955. Unfortunately, this was not recognised, and the benefit of rehabilitation was questioned until at least 2000, and it is still questioned by many.
Even more striking, this benefit does not arise from any specific one-to-one therapy that reduces impairment and improves function. It derives from greatly improved care, massive attention to patient education and adaptation to their environment, and developing effective protocols to reduce the risk of and treat complications such as skin pressure ulceration and urinary tract infection. Furthermore, it emphasised that rehabilitation expertise is needed long after the initial treatment episode.
These vital lessons have not been learned. Almost all rehabilitation services are exceptionally time-limited, focused on therapy to improve function, and not enabled to focus on long-term social functioning. Moreover, people with progressive disorders, frailty, congenital conditions reaching adulthood, and many other conditions are either denied rehabilitation or considered of such low priority that they scarcely get any input.
Yet there is published evidence of benefit for most conditions, types of disease, and stages of the illness.
One reason for the failure to learn from spinal cord injury and to take seriously the extensive evidence of effectiveness may have been the lack of a rehabilitation theory to explain and support these observations. The General Theory of Rehabilitation, published on October 27, 2023, explains why rehabilitation is so effective and shows that rehabilitation therapy to improve function is only one element in a complex process. Furthermore, the rehabilitation given now will only be a short episode in most people’s lives, and the team must recognise that.
Rehabilitation's roles.
Adaptation is the key feature.
The role of rehabilitation is to “aid adaptation to changes associated with illness through accurate diagnosis and formulation, catalysing adaptation, optimising the environment and assisting the person in making necessary changes by safely practising activities and teaching self-management.” In other words, it should facilitate a person’s adaptation to constraints imposed by illness, and its overall input is shown in the figure below and downloaded here.
Everyone adapts to changes in their lives, both major and minor, and seeks help wherever necessary and available. When the change is due to illness, the first source of help is the health service and, sometimes, the rehabilitation service within healthcare.
The critical points to remember are that adaptation:
- Starts before and continues long after the rehabilitation episode
- Always benefits from assessment, formulation, and planning, which are catalytic actions that ensure the person follows the best adaptation; nothing else may be needed.
- Is led by the person and depends on their active engagement, which requires concordance between the rehabilitation team and patient concerning formulation. plans, and actions.
- Continues and may need a lower level or less frequent input from rehabilitation expertise well after the first initial episode
- Continues until the person reaches a stable biopsychosocial equilibrium with meaningful hopes in their life.
Rehabilitation expertise can be broken down into the following areas:
Diagnosis: what does the person need to adapt to?
This activity starts with collecting data, the so-called assessment, and then analysing the situation to provide a formulation. The data collected and its analysis should specifically identify areas where intervention might help, prognosis, and the person’s hopes and long-term goals to inform rehabilitation planning.
This is essential when a person is first seen, and data from all professionals who know the person should be shared, discussed, and analysed collectively. After that, data from treatment trials, changes in the person or their environment, and any other data should be reviewed. The reanalysis may alter the formulation.
The formulation should be framed within the biopsychosocial model of illness and include information on prognosis. It should be shared with the patient and all professionals involved.
Assessment and analysis are mainly diagnostic, gaining sufficient understanding to draw up a plan of action.
Planning: how might the person adapt?
The professionals involved with the patient must use the formulation, including information about the person’s aspirations and priorities, to develop a collective, agreed rehabilitation plan. The plan may be created with the patient present or, more commonly, explicitly discussed with the patient before any significant actions or changes occur to ensure concordance between the patient and the team.
Planning is primarily catalytic. It offers the person a range of ways to adapt, most of which will be undertaken by the patient. In other words, the team provides a set of recommended actions for the patient, family, or others to undertake. The team may monitor progress, re-evaluate, and offer further advice. It uses its expertise without doing anything directly.
The plan must consider the situation well after discharge from the rehabilitation service, and part of the plan must prepare for the anticipated move or transfer. It is unacceptable only to plan what the team will do with the patient in their service. The plan must be part of a longer-term plan, and the team must identify actions needed to ensure an appropriate transfer.
Suppose there is no definite or likely transfer planned. In that case, one high-priority rehabilitation goal must be to explore where the person will go and discuss options with the patient, family, and, if necessary, funders. The team is responsible for ensuring this happens and should lead the process or share responsibility with another person. They cannot transfer responsibility to another party because only the team knows the patient’s needs.
In practice, the rehabilitation team can investigate and suggest the best option, contact the relevant organisation, and discover who else needs to be involved, usually funders. Then, the rehabilitation team should arrange a rehabilitation planning meeting to plan a safe and timely transfer.
In summary, the team needs to set its immediate plan in the context of the next few years of the person’s life, paying particular attention to the end of the team’s involvement by answering the following questions:
- Will they need ongoing expert rehabilitation input? If so, who will provide it?
- Will they need ongoing care and support? If so, who will organise and pay for it?
- Will either of these needs require residential placement? If so, where?
- What is the anticipated situation in five years.?
Assisting the person’s adaptation.
The third role, which is only needed by some people, is to offer direct assistance to the patient or family. This includes actions typically referred to as therapy, but many are rarely recognised as therapy. They include:
- Teaching a person how to undertake an activity (either lost or never had)
- This includes demonstration, support and supervision, giving feedback and encouraging practice
- Teaching self-care strategies, including goal-setting techniques
- Teaching family, friends, and carers how to assist learning by the patient
- Helping the person in adapting their expectations, goals, and beliefs as necessary
- Assisting the person in adjusting to their new status.
The emphasis is on teaching and learning, with feedback and practice as the main features. Thus, even this direct assistance includes some catalytic actions.
Adapting the person’s context.
This has two main components: altering the physical environment and ensuring any care and support needed to maintain safety and well-being is provided.
Rehabilitation expertise in ensuring the person’s environment is primarily catalytic; the team identifies a need and contacts the appropriate person or organisation to arrange it. Sometimes, the team needs to arrange funding. Sometimes, a rehabilitation service may assess for and supply specialist equipment such as ankle-foot orthoses, wheelchairs, and aids to communication.
The rehabilitation team may also need to teach the person how to use the equipment safely and effectively. This applies to all equipment, however straightforward it might appear.
The rehabilitation team is also responsible for advising on a person’s care needs and ensuring they are met. This is a catalytic function in that the patient is not directly involved. The resources involved may be considerable—phoning, filling in forms, negotiating meetings, etc. More importantly, the rehabilitation team may need to teach the carers and be available to resolve any emerging problems or train replacement carers.
A third related aspect of care is ensuring the person’s pain and distress are minimised as far as possible.
Synthesis – giving a second opinion.
How can one use the ideas given to give a second opinion in a complex case, whether or not there is disagreement?
My first message is that one rarely will identify a previously undetected problem or untried intervention that will transform the situation. Miracles are rare! I have occasionally struck lucky, but it has never been transformative.
Next, always review as much information as possible. I am struck by how rarely people look at previous notes. Many patients have prior records, which often explain or clarify the situation. I accept that obtaining notes is frequently impossible as hospitals are unwilling to provide them or do not have the resources to do so,
Third, always broaden the perspective to cover all aspects of
- the biopsychosocial model of illness,
- the person’s narrative from childhood, covering personal relationships, events (not just medical), work, etc
- the person’s higher-order wishes or hopes in the long-term
- what the situation will be like in the distant future
To achieve this, you will need to spend:
- much time discussing life and interests with the person and family
- little time examining the person; observing them closely while talking is vital
- some time with team members
Concentrating on the subsequent placement and the situation within five years is most helpful.
Conclusion
challenge; the more complex cases where a second opinion is sought often arise because too little attention has been paid to context and the future. Everyone, including me, can become entangled in one aspect of a complex situation and fail to see the bigger picture. This is less likely to occur if the episode starts with a suitable and documented formulation because reviewing it will remind you of the broader context. Before getting a second opinion, it is worth returning to the beginning and the person’s life before the illness began. It is also worth speaking to a carer or family member to gain their view; preconceptions are less of a burden to them.
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