Hope is the key to person-centred rehabilitation

On 3 October 2024, I gave a talk at the Italian Society of Clinical Movement Analysis meeting about how to remain person-centred when gait analysis is your primary expertise and interest. When asked to present a keynote talk, I chose this title because I wanted a topic that challenged me to pay attention to a new aspect of rehabilitation; I hope it will also challenge the audience. My concern is that, in rehabilitation, as in all life, “to a man with a hammer, everything looks like a nail”. For example, if you have chronic low back pain and see an orthopaedic surgeon, they will likely offer an operation. Still, if you see a psychologist, you are likely to be provided cognitive behavioural therapy, or a physiotherapist will suggest exercise, and so on. If your only concern was to know you did not have prostatic carcinoma secondaries in your lumbar spine, then all professionals will fail you. Clinical experts need to check what the person wants from the encounter and their goals.

Introduction

The healthcare system has an implicit model of what people want from healthcare, and most healthcare workers work within this model. This is one part of the culture of healthcare. Culture refers to “the ideas, customs, and social behaviour of a particular people or society” and “the attitudes and behaviour characteristic of a particular social group”. [Oxford English Dictionary, OED]

In most clinical encounters, the assumptions are that:

The person wants their problem resolved
- The problem is assumed to be what the person or referring professional says
The way to achieve this is to:
- Make a diagnosis through assessment and investigation
- Give the specific treatment offered by the clinical service
  - Or refer to another service when this is essential

These assumptions were appropriate when most people attending healthcare had a new, acute illness, and treatments were short-term with limited choice and often little effect. The social consequences of being ill were straightforward, with limited support from more comprehensive social resources.

However, healthcare, illness, and society’s approach to illness have all evolved and become more complex. Earlier assumptions are no longer valid, and the model associated with those assumptions is less relevant.

For example, people have several conditions and rarely expect a cure, though they may still want one. Their goal may be to gain access to a supportive resource, to be reassured about prognosis, to discuss a new symptom, or to talk about dying. People attending follow-up clinics often have little idea why they are asked to return, and some continue to attend, expecting a cure.

When I started working as a consultant at the Rivermead Rehabilitation Centre, the practice was to readmit all discharged inpatients for a two-week reassessment three months after discharge. This was considered best practice. At the end of the admission, we met with the patient and family to explain what we had found—but a little more. I stopped the routine after the first few patients and families gave similar feedback.

They said, “Thank you. We know all that because we have been living with the situation since leaving here. We thought you were going to give more therapy and make things better. What was the point of coming back?” This was a valid criticism. We stopped. About a year later, as a check, a registrar (doctor in training) visited all discharged patients at home; she did not find any new or unexpected problems or identify any significant treatment needs.

How can we ensure we know and respect the person’s goals and meet their needs rather than undertake the activities we consider they need or want?

Goals, expectations, and beliefs

Someone arrives at an appointment with a healthcare professional with a mixture of goals, expectations of the healthcare system, and beliefs about their illness and the role of healthcare. Similarly, the professional will have outcome goals, expectations of the patient, and assumptions about the person’s disease and healthcare’s role. It would be unusual for the two parties to have identical goals, expectations, and beliefs. Differences typically become apparent late in an encounter because they are rarely explored.

In this post, I am using terms as follows:

Goal refers to an outcome in the medium to long-term future, months or years away; the patient chooses the nature of that outcome; for example, it might be freedom from pain, living at home, or being able to work,
expectations concern mainly the patient’s expectation of treatment, what they think treatment will achieve in helping them achieve their goal
beliefs concern the person’s understanding, what they believe causes or worsens their problems and how they conceive the therapy will help.

The patient’s goals will likely reflect their priorities and what they consider essential. Their expectations and beliefs will likely reflect their understanding and be influenced by experience and information from family and friends. All are relevant, but here, I will focus on goals.

I discuss setting goals on a page, reviewing them, drawing attention to superordinate goals. These goals, I suggest, will usually concern accommodation, social networks, social interactions, and social autonomy and may concern (reduction of) pain or (increasing) pleasure. Second, in a post, I suggest Maslow’s needs could be helpful when categorising superordinate goals and might help discover them.

In this post, I will consider how exploring hope may assist us in understanding a patient’s goals and priorities; at the same time, the exploration will reveal beliefs and expectations.

Hope is the key

I am developing my suggestion that hope is an overlooked asset in rehabilitation. I will argue that a straightforward discussion with patients about their hopes may be one way to be person-centred, knowing enough about their attitudes, goals, and wishes to negotiate attainable treatment goals concordant with their needs.

First, I should expand the place of hope in rehabilitation. My post (linked above) concluded, “In adversity, hope is an inbuilt, entirely natural adaptive response. We should facilitate the person’s use of hope by asking about it, adding their aspirational goals and pathways to our formulation, and assisting them in setting and using goals, always accepting their hope as valid without passing judgment.”

Hope is characterised by having a hoped-for outcome, understanding the situation, and making plans based on the belief that one has the power to change the situation. The parallel between rehabilitation and hope is illustrated below:

Hope

Rehabilitation

The person has:

The rehabilitation team has:

Formulation

Analysed and developed an understanding of the situation, and has ideas about prognosis, sufficient to make plans.

The analysis and formulation is based on their personal illness model and beliefs, and any experience they may have of similar situations. They often use a variation of the biomedical model of illness.

Collected, shared, and analysed data to develop an understanding, and have ideas about prognosis, sufficient to make plans.

The analysis and formulation is based on the biopsychosocial model of illness, and the collective experience and expertise of the team

Agency

power to act and alter the situation.

Unfortunately this belief may be reduced by their perception that professionals know better, the severity of their loss (hopelessness), and sometimes the attitude of team members.

The team members individually and as a team believe their interventions will alter the situation beneficially.

Goals

Hope refers explicitly to the person’s wanted future state. They are likely to have several goals, some more distant, less achievable, or experience-based than others but most will be social.

Rehabilitation planning should be based on overarching or superordinate goals, but in practice is usually based on shorter-term objectives sett mainly by professionals. Many teams only set SMART goals, but many important outcomes cannot have SMART goals; I highlighted this in 2008.

Plans

Conceiving plans to achieve goals is an essential component of hope. In an illness, the person is unlikely to have sufficient knowledge to develop good plans although often people have helpful ideas not considered by rehabilitation professions.

Rehabilitation planning is an important part of all rehabilitation, identifying who will do what, when, and with whom. The professionals have the advantage of know what might help and how to achieve it, Unfortunately, they may also discount ideas put forward by the patient or family

Like many professionals, I avoid exploring a patient’s hopes because I am afraid of losing control and causing them to become distressed if I consider their hopes unrealistic. I now think this is wrong and can be criticised as paternalistic. More importantly, the person’s fears may be excessive, and exploring their hope may offer many advantages.

As should always be the case, one must prepare before opening a discussion. Preparations could include:

ensuring reasonable time and privacy are available
considering whether family or friends should be present and how they might influence the conversation.
considering what their hopes might be based on the condition, typical expectations, and anything previously mentioned by them
rehearsing your opening and possible answers to expected challenges

A reasonable opening question might be, “What do you hope you will be like in a year?” It is sufficiently ambiguous about what aspects of their situation you are interested in to allow them to control it.

You can then explore further, remembering that how you phrase questions is crucial. For example, “Is there something else you hope for?” is much more likely to elicit a response than asking, “Is there anything else you hope for?” The critical point applies to all languages and cultures; one must phrase questions in a way that is open to an answer and does not carry any attached judgment. The patient must feel safe and able to reveal personal information to the questioner.

During the conversation, one should explore what they anticipate from their rehabilitation, how they think treatments will help, and how vital a therapy is to them.

This explicit conversation, which may need to be continued over several meetings, should aim to discover the following:

From hope:
This should reveal their priorities among various outcomes—social, personal, functional, and experience (pain, pleasure, etc.).
From understanding:
Discussing their understanding of the situation should reveal their beliefs about mechanisms and causation.
From plans:
This should reveal what treatments and actions they consider will help and how. Inquiries about rehabilitation treatment will reveal their likely commitment to a specific treatment.
From agency:
This will reveal their self-efficacy and likely engagement in treatment programmes requiring them to practice or take responsibility.

This may sound time-consuming. However, the conversation could be relatively brief in a straightforward situation where the treatment will likely be complete and successful over a few weeks. In other situations, the topic could be opened early but only explored fully later; indeed, one might have a series of short conversations. This approach is proportionate.

Nonetheless, one should always explore hope, understanding, and beliefs, as sometimes one may be surprised.

I once saw a patient referred by a general practitioner for advice on back pain. She did not know why she had been referred and no longer had back pain. She did mention a pain related to a metal plate used to treat a tibial fracture; she thought I was a surgeon and might be seeing her about her pain in the leg. I agreed to refer her to a surgeon to discuss the plate removal. She said, “But I do not want my skin cut. I do not want any scars.” I did not explore how she thought someone could remove metal attached to a bone without cutting the skin!

Hope and goal setting.

Rehabilitation practice holds that people should have overarching, superordinate long-term goals, much as many organisations have mission statements. These are equivalent to purpose and crucial to good business and rehabilitation; the evidence supporting this dogmatic statement may be thin. Nevertheless, I accept the premise, and one reason is the evidence that Maslow’s needs are valid and that they are the ultimate overarching goals.

What is the nature of these goals? They are long-term, and in an adult, they are likely to be imprecise, and certainly not SMART, an acronym with many interpretations. Indeed, many are unachievable, such as to reduce the suffering of people in war zones. Most usually concern social roles or relationships. Some, in people with painful or distressing conditions, may involve the reduction of personal suffering. They are influenced significantly by religious, spiritual, or philosophical beliefs and associated attitudes.

Hope is sometimes expressed in terms of complex functions, such as wanting to go on a world tour, take the family to New Zealand for a month, or see the Grand Canyon before dying.

In their paper, Setting meaningful goals in rehabilitation: rationale and practical tool, Joost Dekker and colleagues describe a method for elucidating a person’s ‘global meaning’. This term encompasses the person’s “fundamental beliefs, goals, and attitudes”. Elspeth Littooij and colleagues investigated the person’s and clinicians’ experience with this method; both parties felt the tool helped set personally meaningful goals. However, it is resource-intensive and only suitable for more complex patients with prolonged inpatient care.

Joshua Lee and colleagues have argued that “purposefulness is an ever-present component throughout our lives and it exists as a convergence of personal factors, past experiences, and our personal narrative.” Their article shows that purposefulness and its components help determine successful adaptation to illness; they do not explore how this is established.

These concepts are related to meaning in life, and Esther Cow investigated the role of meaning in life in patients undergoing rehabilitation after a stroke. Her data suggested that having meaning in life influences life satisfaction and well-being.

These and other studies suggest that fundamental personal attributes influence a person’s behaviours and priorities. Studies on Maslow’s needs suggest that progressing towards these deeper goals motivates behaviour and increases well-being. The Dutch study has proposed one detailed but resource-demanding way to investigate basic personal motivating factors.

I suggest that a more personal exploration of a person’s hopes by a trusted professional may achieve similar ends but with fewer resources. Moreover, it can be achieved proportionately and within routine clinical practice.

Conclusion

Hope is personal. Discussing a person’s hopes with them early in the rehabilitation process may give the team or professional a helpful insight into their goal priorities, beliefs, and understanding of their illness. I have not come across systemic research studies investigating structured assessment of a patient’s hopes as a means of setting goals. The evidence I reviewed in an earlier post suggests that asking about hope will not cause difficulty, provided it is undertaken carefully. The advantages of this approach are its flexibility and feasibility in a clinical context. Because hope is uniquely personal, the outcome of exploring a person’s hopes may be a much more person-centred approach to their rehabilitation.

Quick links

General Theory of Rehabilitation

Hope for rehabilitation & vice versa

Hope literature database

Person-centred assessmentRead More

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Hope is the key to person-centred rehabilitation

Table of Contents

Introduction

Goals, expectations, and beliefs

Hope is the key