Knowing the patient.
Recently, I saw a patient in a care home to give a second opinion on rehabilitation needs, and the team gave me a detailed report on their observations. I read the 15-20 page report, which included standardised assessment and personal observations. One colossal omission struck me: no information about the patient beyond gender and age. None! Later, I met many family members; at least one family member visited daily and had done so for five months. I asked them to tell me about the person. Apart from clarifying some statements, I did not need to ask anything more, and after 20-30 minutes, I knew his interests, what he valued most, his personality, and his likely priorities. None of this was present in the team’s evaluation, rehabilitation planning, or goal-setting. This post explores how we could do better at knowing the patient.
Table of Contents
Introduction
In the medical dark ages, when I was training, referral letters would often start with a sentence such as “I would like you to see this charming if a bit eccentric butcher whose hobby is fishing because he injured his right hand while gardening and can no longer work or fish.” The style was sometimes patronising, often judgmental, and would no longer be acceptable, but it immediately humanised the patient. I would not advocate a return to biased comments about a patient. Still, we must know the patient better and somehow re-establish a focus on the patient rather than their disease or measures of their impairment or activities.
Many factors have contributed to the almost complete removal of information about the person in our records, such as:
- A feeling that everything must be standardised and measured with the attitude that free-text and adjectives are to be avoided
- The use of an electronic patient record with fixed templates for disease and impairment but no space dedicated to activities and social participation
- A healthcare system that has lost continuity in personal relationships as care roles and rotas are fragmented into focused activities and isolated time slots
- A failure to value personal information, with a consequent failure to design record systems that capture it and facilitate access
At the same time, healthcare systems increasingly embrace slogans about being person-centred, and the value of being person-centred is being recognised. It is time that rhetoric was matched by knowing the patient better.
Is there a helpful structure?
We naturally use a structure to organise the information we collect, and the default framework arises from our understanding of the situation. For example, most healthcare professionals have a professional framework: nurses use a nursing model, occupational therapists often use the Model of Human Occupation, and doctors use a biomedical approach centred on organ systems.
Structures are best when used as a framework, where the person collects data and then finds the domain that forms the best match. In other words, data are collected first and then allocated to a domain rather than starting from the domain and going out to find information. The former approach focuses on finding an answer to a question; it is testing hypotheses. The latter technique is often approached as a form-filling routine, collecting data for its own sake.
The essential characteristic is to consider the categorical domains as guidance with fuzzy borders; they are not absolute, do not have criteria or definitions, and are designed to be helpful, not obstacles.
I have previously discussed personal factors in rehabilitation, starting from the World Health Organisations’s document that introduced them, Towards a Common Language for Functioning, Disability and Health. The first MindMap, just below, shows the framework I used then.
The context of this post is different; I am interested in developing the domains shown in the second MindMap, below. I searched but could not find a relatively simple theory that covered rehabilitation needs. We must understand the person’s internal factors influencing behaviour and the external social contexts that may facilitate or hinder adaptation and rehabilitation. Undoubtedly, the framework can be improved, but it is a start. I will discuss each so that we know our patients better.
Overview
I have divided the framework into two main domains, comprising five subdomains.
One main domain concerns factors intrinsic to the person that may exert a general influence over activities, goals, and priorities. The three subdomains are not mutually exclusive; sometimes, an individual factor could be allocated to two or all three domains. The common feature is the general nature of the influence; they are characteristics of the person that remain relatively stable.
The other main domain concerns the person’s environment, and the factors may act as constraints or as resources.
Identity
Each of us assumes our continuity; we consider ourselves the same person now as we were as an adolescent or child and as we will be age 70 or 90. We build our identity on perceived achievements or failures, actions, choices, etc. Dan McAdams and Kate McLean summarise, “Narrative identity is a person’s internalized and evolving life story, integrating the reconstructed past and imagined future to provide life with some degree of unity and purpose”.
Narrative identity may influence people’s decisions and priorities because they wish to maintain their persona. If there is evidence that a person based their choices on keeping their perceived character, it might be something to consider when determining their best interests.
Another aspect of identity is the importance attached to roles. For some people, this may be the status associated with a title, such as Professor Head Gardener or Artist; for others, it may be a family role, such as the matriarch or the person they turn to for advice.
Others may base their identity on their values, and Steven Hitlin has suggested values are usually the core of personal identity.
Last, other people will first recognise a person through their appearance, including how they walk, talk, and generally move and behave. For some people, their bodily, sartorial, or other aspects of appearance are considered a crucial and integral part of their identity.
Clinically, one can ask someone to go through their life (briefly) starting with school. Listening carefully for a few minutes without asking questions will give you a feel for how someone sees themselves. One can also ask family or friends to summarise how the person saw themselves or what sort of person they were.
Values, attitudes, and priorities.
These personal characteristics deliver consistency to all decisions; they are a background disposition that will not dictate a decision but will have a pervasive effect on all choices. This contrasts with attitudes, which apply to specific situations.
Values are a core aspect of identity that motivates behaviours and choices. Shalom Schwartz has developed a comprehensive model over several decades, and much background will be found in “A Theory of Cultural Value Orientations: Explication and Applications” (2009) and “Personal Values Across Cultures” (2022) with references to many further articles such as “How Do Values Affect Behavior? Let Me Count the Ways.” This section is mainly based on these three articles.
The focus of values varies across different cultures. For example, the United States population places greater emphasis on personal autonomy and choice compared to the European population, which places more emphasis on social factors such as universalism and benevolence.
Nonetheless, the values of individuals in any culture will also reflect their priorities and cannot be assumed to mirror those of the general population. Moreover, many local cultures exist within a continent or country based on religion, locality, history, etc. Thus, one must never assume that a person’s values mirror general or local values.
The MindMap below shows the four higher-order and ten fundamental values the theory identifies.
The evidence suggests that personal values:
- Are an integral part of a person’s self-identity
- Are socially desirable and facilitate cooperation with people who share similar values
- May conflict and, therefore, must be prioritised by the person. Consequently, individuals rarely have the same mix of values
- Are broad and apply across most contexts and situations
- Are stable over time, not varying in their absolute or relative importance
- Are a product of cognitive processing and can be easily brought to mind
- Help a person to assess and judge choices and justify their own decisions.
There are at least 13 scales for measuring values, but these are not feasible in clinical situations and are unlikely to be valid. Clinically, judging values will require asking the person or a close family member or friend, establishing why a person made certain decisions, and considering the likely values underlying choices.
When someone has the capacity, one does not need to know their values. However, they may lose capacity, so it is helpful to discover and document them in case capacity is later lost.
Maslow's motivating needs
I have discussed these in a post and have suggested they are one way to classify or establish a person’s life goals. They also help when considering biopsychosocial homeostasis in the general theory of rehabilitation.
When a person can communicate, one can use them to establish priorities between the three more elective domains: love and affiliation, esteem, and self-actualisation. When someone lacks capacity but is likely to improve, one can use Maslow’s domains of need to outline a rehabilitation plan, asking others what the person is expected to choose.
Clinically, their principal value is to help structure information collection and rehabilitation planning. They offer another way to establish a person’s priorities.
Social networks.
Information about a person’s social networks is crucial for understanding them. It will give information about their interests, likely priorities, and roles. It also helps in rehabilitation planning because the people they know are also a resource that can be used to support change – and motivate the patient.
The simplest way to establish networks is to ask who someone sees over a period of time, such as a month. The context of the social contact is essential: Are they seen accidentally or by design, and what is the relationship? The intention is to establish the main groups a person interacts with, such as work colleagues, family, community groups, hobbies, professional carers, etc.
When a contact is mentioned, one should also consider the nature of the relationship. For example, some relationships can provide emotional support, others practical support, and others are primarily social with a shared interest. The key is to be curious, not in an inquisitive manner but through showing a natural interest.
One is likely to discover how few people a disabled person interacts with. Loneliness is a frequent issue that I have written about. It is worth asking if someone feels lonely; one should avoid assuming loneliness. Some people do not want to meet more than a few people, and others may feel lonely despite frequent social interaction.
Practical context.
Although the previous four issues are highly significant, the practical context is perhaps the most important practical consideration in rehabilitation. People with a disability are more likely to be socioeconomically disadvantaged with fewer social networks and support, all adding significantly to the challenge of rehabilitation.
I am still surprised by how little hospital staff know about even basic information. One of them is the nature of a person’s accommodation, a factor that has a direct and immediate effect on being able to discharge a patient. The questions one can ask are as follows:
- What is your home like:
- One or more storey?
- Toilet and bathroom accessible?
- Support at home?
- Living with anyone?
- Close neighbours?
- Access from street?
- Steps, stairs, lifts?
- Neighbourhood?
- Shops?
- Transport available?
- Finances?
- Capital?
- Income now and in future?
Conclusion
Showing an interest in the person you are seeing will provide most of the information needed without much effort. One should avoid seeming driven by forms; you should show interest and concern. The vital corollary is that the information gained must be documented in a record accessible to other clinicians; crucially, it must also be discoverable and not lost in the usual morass of notes. The information should be collected during clinical contacts. One should start with the relevant practical information and move on to the other potentially more intrusive matters once one has established a trusting relationship. With people at home, this means collecting information during each contact. For inpatients, it can be collected over a few days or weeks. Three issues are central to success. Collecting this information requires time, and this must be acknowledged as part of routine clinical work and not a luxury. Second, recording it is crucial. The information might not be needed for some time when you may have moved on, or the patient moved to a different place. Last, records must be designed so personal contextual data are easily found, and all the relevant information is linked or in a single location.
