Working in partnership with patients
Person-centred care which is delivered with compassion is a key requirement of modern medical practice. There are a range of urgent reasons why this is currently, and for the future, going to be an important part of the way that care is delivered and physicians have an important leadership role. These include the following.
- Clear evidence for at least a decade that people want to be more involved in decisions and plans about their health (see CQC Adult inpatient survey 2015 and The GP Patient Survey 2015) and indeed that organisations such as National Voices reflect the growing frustration that they have with not experiencing this.
- Growing evidence that people are more likely to want to make decisions, more likely to follow them through and less likely to regret them.
Professional and legal responsibility
- Failing to elicit and engage with people’s preferences represents a huge missed opportunity for benefit
- The GMC is clear that there is a professional responsibility to discuss reasonable options with people in relation to their health and respond to their preferences
- The Montogomery ruling (opens PDF, 316.19KB) has provided a legal underpinning to the GMC position.
- Successive health policy, supported by independent Health Policy organisations such as the King’s Fund and the Health Foundation) and endorsed by successive governments for the last 20 years. Most recently this has been rearticulated in the NHS Five Year Forward View
- Working in partnership is critical to addressing the challenges of both health inequalities and health literacy
Person-centred care (which includes shared decision making (SDM) and support for self-management (SSM) approaches) has been adopted by the RCP as key elements of what physicians need to be able to do. The principle that underlies person-centred care is recognition of, willingness, and ability to work with people, as the principle decision makers and agents of their own care. This is true of both specific decisions along a pathway, or people’s self-management of their conditions) between clinical contacts. Person-centred care involves involve aspects of personalisation, enablement, coordination of care, dignity and respect.
Fig 1: Interaction with health professionals. People with long-term conditions are the main agents of their care. They make day-to-day decisions that affect their health (the green wavy line). Only a fraction of their time is spent with health professionals (the orange vertical lines). However, these interactions are precious opportunities for people to understand their condition(s), how they are getting on with them, and what options or choices are open to them. Understanding what the condition means to the person is therefore critically important to supporting them to live well with it.
(Fig 1 reproduced with permission from: Year of Care Partnerships. ‘The challenge’ (drawn by people with long-term conditions at a world café event), 2016. www.yearofcare.co.uk/challenge)
Fig 2: The four principles of person-centred care. Person-centred care can be thought of as having a number of dimensions summarised above as care that is personalised, coordinated and enabling, at the same time as treating the person with dignity, compassion and respect.
(Fig 2 reproduced from: The Health Foundation. Person-centred care made simple,What everyone should know about person-centred care. The Health Foundation, 2014. Fig 1, page 7)
What is needed: Effective person-centred care requires particular attitudes and skills from physicians. It also requires local and national systems and processes of care to be designed to support people to be involved as equal partners. This does not happen simply by wishing it so. It requires specialties to design and deliver services, and to conduct consultations in a person-centred way. This is summarised in the House of Care approach which can support design by acting both as a metaphor and as a checklist of what is needed.
Fig 3: The House of Care. Each health community generates its own understanding of what is needed for engaged and informed patients and clinicians committed to partnership working, with supporting organisational processes and commissioning. This acts as the basis of a local action plan to enable care and support planning to take place.
(Fig 3 reproduced from: Lewis-Barned N. Shared decision making and support for self-management: a rationale for change. FHJ 2016;3:117–20. Fig 4)
Practical aspects of working in partnership
Putting systems in place
Physicians, specialties, services and organisations need to address these questions:
- What do people need to be fully engaged and informed about decisions and plans relating to their care?
- What do physicians need to be fully committed to working in partnership with people in this way?
- What organisational processes and commissioning support are needed to make this happen?
These can apply to specialty services in acute, non-acute and integrated settings.
|What people may need||What physicians may need||Processes and commissioning|
Patient education programmes
Personal health information before consultations (‘how I’m doing / where I am in the process / what my results mean / what to expect’)
Access to information about their condition / the service
Signposting into directory / ‘menu’ of services
Attitudes which value the person’s priorities and abilities
Consultation skills (eg eliciting person’s understanding and priorities, discussing risk, sharing bad news, care planning and SDM, health coaching)
Decision grids and support tools
Team culture including: compassion, consistency and coordination
Role models and resources
Ability to access to directory / ‘menu’ of services
Guidelines and pathways designed to recognise people’s roles as agents of their care
Sharing health results with people
Coherent IT infrastructure
Person-centred commissioning based on knowing the population
Measuring outcomes that matter to (and for) service users
Outcomes focussed service design
Development of directories/’menus’ of services
Developing technology based support for self-management
All of these examples recognise that people live in a social context and may include involving carers and families where appropriate
The process of care
National Voices has identified four key stages to the process of care and support planning which are widely endorsed for care and apply to SSM. A similar process is encapsulated in an RCP animation for SDM.
- Preparation (including personal relevant information in advance, decision support and consultation prompts, and where possible time to reflect).
- Consultation, including sharing of personal and clinician agendas, exploration of options and planning/decision making.
- Documentation which is owned by the person.
- Agreeing review.
The principles of person-centred care remain, however they may need adapting to different contexts.
- People who lack capacity. There is a legal framework which supports this and requires physicians, where possible, to act in a person’s best interests including consulting with those best placed to reflect their likely preferences.
- Learning difficulties (LD). The assumption should not be made that people with LD do not want to be actively involved. There will usually be relatives/carers who support people with LD to make decisions and the same approach should be adopted with health decisions. Time may be needed to provide face-to-face consultation or support prior to and during consultation admissions.
- Literacy and numeracy barriers. These affect more people than is commonly appreciated. Thought needs to be given to the presentation and discussion of information to recognise this and to provide material that is easily accessible. A ‘teach back’ approach may be needed.
- Cultural barriers. These may require service design, with support from communities with different cultural perspectives about health, and sometimes development of culturally appropriate resources and skills. One example of this is the Year of Care pilot project (opens PDF, 4.23MB. See pages 95-115) in Tower Hamlets, London.
- Young adults and adolescents. Young people have a different attitude to health and are generally sensitive to the behaviours and attitudes of authority figures around them including health professionals.
- Advanced care planning and escalation of treatment. A clear understanding of personal preferences is needed for this to be person centred. Both require all of the skills of SDM/SSM but are both context dependent and require regular review.
- Acute care settings. Assumptions are sometimes made that in acute settings people are less interested in being involved in decisions and plans for their care. In fact, around 40% people want greater involvement and this includes better information early on after admission, involvement in decisions around options and participation in planning as transfer home approaches.