PDOC service design
Last updated: March 1, 2025
Healthcare effectiveness is determined mainly by its organisation and its design. This is probably true for an individual patient and is undoubtedly true for a population of patients with a similar condition. Resources, especially the team’s clinical expertise in diagnosis and management, come second. Having effective interventions is third because they can only help if the patient gains access to the necessary knowledge at the appropriate time.
Patients with a prolonged disorder of consciousness miss out on every front. Services lack intentional design. They are usually absent, and existing services are a piecemeal patchwork of individual teams with enthusiasm. Few clinicians and teams have the expertise, and despite freely available guidelines, clinical teams responsible for most patients do not use the available knowledge. No pharmacological or surgical treatments exist, but the few interventions that may improve outcomes, such as minimising the use of sedating medication, are not used. To add insult to injury, many clinicians ignore the Mental Capacity Act 2005 and make decisions without formally evaluating the patient’s best interests.
This page discusses how services might be designed. Improving design would improve patient and family outcomes, reduce health service costs, and ensure we obey the law. The discussion draws on my experience around the UK, a few leading services, lessons from other areas of health service design, and first rehabilitation principles.
Table of Contents
Introduction
The emergence of new needs or treatments drives the evolution of all healthcare services; social, cultural, and economic considerations heavily influence the exact changes. Prospective service planning using a coherent model never happens because the changes occur before theoretically sound conceptual models have been developed.
Once a pattern of service delivery is established, it will evolve within existing healthcare, economic, social and cultural environments. Healthcare is a complex, adaptive system and a more rational, scientific and evidence-based approach will rarely influence developments. For example, despite clear evidence that expert trauma services were effective, it took decades for the NHS to develop Major Trauma Centres, with much local resistance to the development. Similar arguments face almost all significant changes.
Health services pay virtually no attention to patients with prolonged disorders of consciousness. Despite a strong national recommendation in 2013, there is no register, national data collection, outcomes collection, or national service quality audit. Unusually, the Court of Protection has produced anecdotal but strong evidence of poor-quality services, and I have recently written about this.
The first step in improving the quality of care is to use a holistic, rehabilitation approach clinically and in service design.
Holistic rehabilitation approach.
The crucial reason for involving rehabilitation is our ability to optimise the outcomes for the patient, their family, others concerned about them, and society. Rehabilitation assessment, formulation, and planning improve care, reduce cost if the person emerges, support families, and maximise the patient’s respect and dignity.
However, many people question the role of rehabilitation for patients with a prolonged disorder of consciousness because “there is nothing you can do”, sometimes phrased as “there are no goals, and rehabilitation must have goals”. These comments reveal a profound misunderstanding of rehabilitation.
The General Theory of Rehabilitation highlights rehabilitation’s role in facilitating the patient’s adaptation to their situation. This remains true when someone lacks autonomy because they cannot make choices. Moreover, though not explicitly stated in the theory, rehabilitation is also responsible to the family and, ultimately, to broader society.
Second, not all goals are measurable, and not all relate to patient function. I have argued against the dominant belief that goals must always be SMART.
Third, no other service accepts any responsibility.
Rehabilitation’s success depends vitally on its holistic approach. At every stage, the service for patients with a prolonged disorder of consciousness must remain holistic. This means using the biopsychosocial model of illness, particularly the temporal context. From the beginning, one must consider the person’s long-term outcome and the years ahead and avoid the temptation to focus on one’s interests on the here and now.
This requires full use of the first two rehabilitation-specialist capabilities in practice:
- Use the biopsychosocial model of illness in all areas of practice.
- Develop (with others) a rehabilitation plan for the patient.
The holistic approach means attending to everything: understanding the brain damage and checking its accuracy to ensure that it is sufficient to cause the observed clinical state;
reviewing all drugs; ensuring the person does not experience pain or distress; considering their social interactions; and so on. Moreover, the rehabilitation approach includes listening to and supporting family and friends and other holistic matters.
Most importantly, in addition to discussing immediate issues, the first rehabilitation person in contact must consider and discuss the long-term outcomes and possible later decisions with the family, even if only to alert them to potential future discussions.
So, how can we know that a service takes a rehabilitation approach?
Rehabilitation capability.
Most services involved with this group of patients provide good care but fail to offer a rehabilitation approach. The recent British Society of Physical and Rehabilitation Medicine’s (BSPRM) guidance on rehabilitation outside NHS hospitals considers what characterises an organisation that does provide rehabilitation. I have also published a paper focused on this issue.
The first requirement is for a service to satisfy seven generic service capabilities. They are shown in the MindMap below. They are that the service:
- functions seamlessly within their local healthcare and social support systems.
- adapts their care and activities to the social context of their residents.
- communicates effectively with their residents and their families in shared decision-making
- focuses on quality and safety and participates in quality improvement systems.
- understands and supports research.
- teaches and supervises all levels of healthcare staff,
- bases their clinical practice on the best available evidence and professional standards.
The BSPRM guidance suggests seven rehabilitation-specific capabilities any rehabilitation service should have to confirm it provides a holistic, comprehensive rehabilitation approach, even when it specialises in a specific condition, intervention, or process. Each capability is listed here and linked to a document that provides some detail and, more importantly, some objective indicators the service should have to demonstrate its capability.
- Use the biopsychosocial model of illness throughout the service. (Link)
- Use a multi-professional team that can meet 80% of the person’s needs. (Link)
- Develop a person-centred rehabilitation plan for each person. (Link)
- Work collaboratively across organisational and geographic boundaries. (Link)
- Provide rehabilitation interventions tailored to the person’s needs. (Link)
- Identify the clinical requirements of their caseload and ensure staff have the competencies needed. (Link)
- Acknowledge and manage uncertainty and complexity. (Link)
They are also shown in the MindMap below. This site will provide more details in the future.
These are overall capabilities; they demonstrate a rehabilitation approach, but do not necessarily mean a service provides safe and effective rehabilitation to a specific group of patients. I will discuss how to achieve that next.
Rehabilitation competencies.
Capability ‘f’ above (in bold) highlights the service’s responsibility to ensure the service has the staff and resources needed to meet the specific needs of the patients managed. Patients with a prolonged disorder of consciousness require most of the 11 competencies already given in the BSPRM guidance; this includes the specific “PDOC competency”.
I have selected two competencies that should be sufficient to demonstrate overall competency. As the guidance and my publication stress, the system aims to select indicative competencies and items. The assumption is that a service that shows the chosen competencies can be trusted to have any other required competencies needed.
The first competency, shown here, is in managing patients with a prolonged disorder of consciousness, concentrating on specific aspects:
- Their lack of mental capacity
- The need to be proactive, with advance care planning and planned reviews
- A requirement to consider whether treatments should be started or continued
The second competency, shown here, is managing people with a tracheostomy. A significant and increasing proportion of patients with a prolonged disorder of consciousness are discharged from acute care still dependent on a tracheostomy. Some can later be weaned. The competency covers:
- a safe response to acute problems
- a prospective management plan
- expert external support
Other relevant published competencies can be seen by clicking on the link, and they include:
- skincare
- posture and limb restrictions
- bowel and bladder dysfunction
- palliative care
- impaired oral intake
I have now established that any service responsible for managing and caring for people with a prolonged disorder of consciousness should embrace a holistic rehabilitation approach and outlined how a service may manifest this. The next challenge is organisation: How do we ensure the patient receives a seamless expert service as long as they need it?
PDOC service design: a network.
Everyone wants a service with singular expertise in their condition, and enthusiastic clinicians interested in it usually advocate for condition-specific expert services. Nevertheless, we should not develop services explicitly and only for people with a prolonged disorder of consciousness.
This immediate desire for unique services for conditions perceived by some to be unique would lead to huge problems given the vast number of conditions. I have repeatedly argued against unique services for traumatic brain injury, Covid, multiple sclerosis, and other conditions.
Instead, services must be designed within the local context, using existing services with relevant expertise and increasing expertise in some services to ensure all needs are met. A few individuals within the broader service can develop condition-specific expertise. They would support other teams as needed, might be the first point of contact, and should have a leading role in improving services.
This approach is essential for all conditions and requires developing a rehabilitation network. The Community Rehabilitation Alliance suggested this some years ago, and I have written about the need for and development of rehabilitation networks. A complete rehabilitation network is unlikely to arise spontaneously. Starting with a network for patients with a prolonged disorder of consciousness offers a non-threatening approach to network development, as few people have sufficient interest to resist it!
This approach requires a group of local interested clinicians to review the inevitably incomplete data available on existing patients and existing services to (a) list all services that are or should be involved with this group of patients and (b) identify any absolute or relative deficiencies needing attention. They should then start envisioning how patients might move through existing and developing teams and discussing how transfers across interfaces can be optimised.
This requires commissioners’ (funders) commitment to move to a flexible funding arrangement that avoids delays or blocks in a patient’s progress through the network. It also must prevent the imposition of specific pathways, dictating who should go where and when. Each person is different.
The 2020 National Clinical Guideline, Figure 3.1, suggests a generic route. The guideline now probably over-emphasises detailed assessment of a person’s level of consciousness. A person’s best interests are the pre-eminent concern, influenced mainly by prognosis and burden of care or degree of function and social interactions. The feature almost universally overlooked is that a patient may need more intense and expert input later rather than sooner. Transferring a patient to an inpatient unit after a spell in a nursing home providing slow-stream rehabilitation or long-term care must be accommodated; in practice, it is rarely required.
We now move on to the crunch question: how do these ideas translate into an actual PDOC service design?
The PDOC service design.
Below is an overview of a service design. It suggests five types of service, with a lead service, which will be one of the five types, most likely and usually most appropriately the service with the most expertise. The design is a specific example of the basic rehabilitation network design.
Three of the service types will be responsible for patient care while the patient is under their care:
- acute hospital services
- expert rehabilitation services
- nursing home services (and, occasionally, community services)
The other two types will be supplementing the responsible service:
- an expert outreach service, typically part of the inpatient expert service
- services covering various particular interventions such as respiratory support, equipment, and palliative care.
Acute services always see patients with an acute brain injury causing the prolonged disorder of consciousness. Moreover, patients in a nursing home, at home, or in an inpatient rehabilitation setting may occasionally be admitted with an acute deterioration needing hospital care.
Nursing homes, and potentially community care services, are the second type of service, providing long-term rehabilitation and care. Most patients entering a prolonged disorder of consciousness resulting from a progressive disorder will be in a nursing home; a few will be at home. Most people receiving long-term care after an acute-onset disorder will be in a nursing home, but an estimated 5% to 10% will be at home.
The third type is an inpatient expert rehabilitation service. The national guideline recommends that all patients with acute-onset conditions be admitted to a specialist unit from the acute service before entering long-term care. This is to assess consciousness and advise on care needs and prognosis. However, if an effective expert outreach service is commissioned, this may not be needed. Nonetheless, some patients will need admission. They may have unusual or challenging features that require more intense evaluation. Some patients eventually emerge from their unconsciousness and require active rehabilitation.
An expert outreach service is a crucial feature of any service, notably absent in most places. This is surprising, ass it is likely to reduce the use of the expensive inpatient rehabilitation service. It must be able to see any patient, at any stage of their illness after onset (e.g. first while the patient is in intensive care), in any setting, and whatever the cause.
This outreach service is likely to be part of or closely associated with the inpatient expert rehabilitation service. Its roles include assessment, monitoring change, advising on prognosis and treatments, considering care options, actively participating in some interventions, and participating in rehabilitation planning, especially best interests meetings.
Last, a wide range of other services have a role. They include assistive technology services (seating, etc), community dietitian services, surgical, ENT, specialist respiratory services, palliative care, and many others.
This network will require a lead service to organise clinical aspects, and a governing body to ensure that all parties are involved, especially the commissioners.
The greatest challenge is to achieve the organisational and cultural change essential for this unoriginal, obviously better arrangement to succeed.
They key: a PDOC service register
Nothing written here is original. The needs and solutions are equally obvious. The challenge is to achieve transformation.
Most people are unaware of this group of patients. I have been in contact with large Integrated Care Boards responsible for over 500,000 people who said they did not think they had any patients with a prolonged disorder of consciousness. The best estimate suggests they will have over 30 and probably over 100 patients. As continuing healthcare budgets should be paying for their care, they are spending £3.6M to £12M annually on long-term care.
Services are unaware because no one service sees many patients, and most services see them rarely. A few nursing homes will have significant numbers (2-10).
Establishing sound local data is the first step, and it should be relatively easy because most patients will already be known to someone. A service or department leading the project should contact the following people who will know a few patients or will encounter them as part of their daily work. They should register each patient with a prolonged disorder of consciousness seen.
The target services are:
- community dieticians.
This service will review patients having gastrostomy feeding regularly. - Continuing healthcare managers.
The continuing healthcare budget will fund most patients, and each should have an annual review. - Gastroscopy service.
Almost every patient will have a gastroscopy to place or replace the feeding tube. Each should have a best interests decision made before the gastroscopy. - Intensive care units.
Most patients with acute onset brain damage will start in an intensive care unit and they should notify every patient who is still unconscious when returning to a ward. - Specialist rehabilitation service.
Some patients will be referred and, even if not taken one, the patient should be registered.
This network of informers will soon notify most patients. Others will be notified or discovered because, for example, a care home may notify other patients for whom they are responsible.
Once a register exists, the lead service can:
- Highlight the numbers to local health and social care organisation
- Outline standards and procedures from the national guideline
- Start an outreach service to review patients
- Start an overview organisation to develop a working network
Conclusion
Currently, patients with a prolonged disorder of consciousness receive a poor-quality service because the clinicians have no expertise and no one to support them. Families also get little accurate information and often no support. Commissioners waste a lot of money as patients remain in the hospital while people look for help or argue about budgetary matters. The Mental Capacity Act is rarely used when it should be. This situation exists despite clear national guidance first published in 2013 and updated in 2020. I have suggested the first step is for a person or organisation locally to develop a register and a simple registration process using four or five information sources that will capture at least 80% of patients. This will highlight that the situation is unsatisfactory. The changes needed are small and will not challenge any existing services or interests, which should allow an incremental development.
