Beyond the numbers:personalising care for people with long term conditions
How do we balance the requirements of the Quality and Outcomes Framework, to tick the right boxes, with the needs of the individual patient?
In 2004 the Quality and Outcomes Framework (QOF) was introduced into general practice. The idea was to reduce variation in care by encouraging practices to adopt standards of care for long term conditions (LTCs) and other indicators of good practice and to be financially rewarded for doing so. As a result, templates were introduced that included the elements which would ensure QOF targets were reached. Template-based care helps to remind practitioners about how to carry out a LTC review by including boxes that can be ticked to show that key clinical areas have been addressed. However, the risk of template-based care is that it becomes formulaic, and deprives patients of the individualised, tailored approach which is a key part of personalised care.
In this article, we discuss the principles of personalised care, and consider the challenges of balancing QOF requirements, and recommendations from national and international guidance, with the individual needs of the patient. By the end of this article, which will focus on long term conditions, readers will be able to:
- Review some of the recommendations on personalised care
- Reflect on whether target-driven care compromises personalised care through a case study example
- Consider approaches that can be taken to address this conflict including what the Nursing and Midwifery Council (NMC) Code of Conduct says
- Analyse the ethical and medicolegal issues that influence this debate
DELIVERING PERSONALISED CARE
NHS England recognises the importance of personalised care as explained at https://www.england.nhs.uk/personalisedcare/. Patient choice is central to personalised care, not just with respect to choosing where, when and how to access care but also with respect to commissioning of services. Examples include how to choose and register with a GP near home or work: https://www.england.nhs.uk/wp-content/uploads/2017/03/patient-leaflet-digital.pdf and how to recognise the choices available when people are referred for a specialist opinion: https://www.england.nhs.uk/wp-content/uploads/2017/03/patient-leaflet-digital.pdf
Shared decision-making is a central component of personalised care and there is information on implementing this in practice, both here https://www.england.nhs.uk/publication/shared-decision-making-summary-guide/ and in the NICE guidelines on shared decision-making.1
Next is the principle of supported self-management, which relies on helping people to develop their knowledge, skills and confidence so that they can have mastery of their condition. Lower levels of self-mastery have been linked to increased cost, faster disease progression, early mortality and increased multimorbidity but supporting people to self-manage can reduce or reverse these risks and reduce the use of healthcare resources, especially for unplanned episodes of care.2 Health literacy is a significant challenge for many people living with LTCs and multimorbidity is linked to deprivation so thinking about different ways of sharing information, beyond, the written word, is important.3 An example of this is the work done by respiratory consultant Llinos Jones, which made use of avatars to explain about asthma and asthma management and which was highlighted in a previous article in Practice Nurse.4
When supporting self-management, the clinician should be able to discuss with the patient what matters to them, so that they are an active and equal partner in conversations and decisions about their health. The clinician may be the expert in the condition/s with which the patient has been diagnosed, but the patient is an expert in understanding how these conditions are only a part of their life and what they are prepared to do, and not do. Similarly, guidelines and protocols are written for generic populations and the skill of the clinician is in reinterpreting these guidelines based on the individual patient’s needs and preferences.
Along with healthcare professionals, there are other members of the primary care team who can help people to make decisions about their care and facilitate the chosen interventions, including members of the health and wellbeing team, care coordinators, and social prescribers. NHSE resources which can help clinicians to improve their understanding of how to actively support self-management can be found here: https://www.england.nhs.uk/personalisedcare/supported-self-management/ .
Personalised care and support plans are a way of ensuring people’s preferences are recorded so they do not need to keep telling their stories and explaining their decisions repeatedly. According to NHSE, a personalised care and support plan must ensure that:
1. People are central in developing and agreeing their plan including deciding who is involved in the process.
2. People have proactive, personalised conversations which focus on what matters to them, paying attention to their needs and wider health and wellbeing.
3. People agree the health and wellbeing outcomes they want to achieve, in partnership with the relevant professionals.
4. Each person has a sharable, personalised care and support plan which records what matters to them, their outcomes and how they will be achieved.
5. People are able to formally and informally review their personalised care and support plan.
More information on personalised care and support plans can be found here: https://www.england.nhs.uk/personalisedcare/pcsp/
So there is a wealth of information about how to support people to be equal partners in their health, but how does this compare with the recommendations from local, national and international guidance and the need to meet QOF targets? This is when general practice nurses can consider and reflect on the Nursing and Midwifery Code of Conduct to inform practice and support patients to make their own decisions. The case study below explains this in more detail.
CASE STUDY – ANDREW
Andrew is 78 years old and has had type 2 diabetes (T2D) for 2 years, complicated by chronic kidney disease (CKD), which was identified at the same time. He was diagnosed with Parkinson’s disease (PD) five years ago and has deteriorated considerably over the past year in terms of his physical health. When he attends for his annual diabetes review, he is noted to have gained weight since his last review, a year ago, and his BMI has increased from 27.6kg/m2 to 30.2kg/m2. His renal test results show that his eGFR is 22ml/min and stable, and his albumin creatinine ratio (ACR) is 28.1mg/g. His HbA1c has increased from 56mmol/mol to 65mmol/mol, his home blood pressure reading is 141/67 mmHg, and his non-HDL-cholesterol is 3.1mmol/L. Previously he was treated with metformin 2g daily but as his eGFR dropped over time, this dose was reduced and eventually stopped. He is taking atorvastatin 20mg and ramipril 5mg. Andrew finds it hard to do physical activity because of his PD but he goes to the local pub three or four times a week, and he consumes approximately double the recommended alcohol intake each week. He also admits to finding it hard to follow a healthy diet as he prefers ready meals and takeaways. His wife has a history of rheumatoid arthritis and is disabled by intermittent flares.
In a template-based version of Andrew’s ongoing care the focus would be on achieving targets – reducing his HbA1c through additional medication such as an SGLT2 inhibitor and improving his non-HDL-C by increasing his dose of his statin, and/or the adding in ezetimibe plus or minus bempedoic acid, and optimising his blood pressure and renoprotection by increasing the dose of ACE inhibitor. QOF targets would be set at less than 59mmol/mol for his HbA1c and a 40% or more reduction in his non-HDL-C. International guidelines would recommend lower targets and would also endorse the use of drugs such as the SGLT2 inhibitors for cardiorenal protection with consideration of a GLP-1 RA for cardioprotection, as well as for weight management. From a non-pharmacological perspective, he should be encouraged to address his lifestyle, including his diet, activity levels and alcohol intake.
When this is discussed with Andrew, he expresses a disinclination to take further medication and that he would ‘prefer to play for today rather than plan for tomorrow’. Although Andrew can be exception-reported from the QOF targets, it is important to consider this further from an ethical and a medicolegal perspective. The Mental Capacity Act states that people with capacity can make decisions about their own healthcare, even if others consider those decisions to be unwise. However, the decisions need to be informed. A careful discussion about the risks and benefits of tighter control of his lipids and glycaemic levels through optimising medication and lifestyle, along with the advantages and disadvantages of lifestyle changes needs to be had in order to ensure informed consent or dissent. A clear exploration of why Andrew does not want to engage with further pharmacological and lifestyle interventions is key and his reasons should be recorded, but in a non-judgemental way so that Andrew does not feel coerced into making changes he is unhappy with – not least as he is unlikely to adhere to them if he does not wish to engage with them.
THE NMC CODE OF CONDUCT
The Nursing and Midwifery Council (NMC)Code of Conduct includes the four Ps: prioritise people, practise effectively, preserve safety and promote professionalism and trust.5 Using the four Ps, after a full and frank discussion has taken place, prioritising Andrew’s wishes should be a central consideration. This concept of prioritising people also fits with the bioethical principle of respect for autonomy. Andrew should be encouraged to express his views and should expect these to be respected. After this discussion has taken place, the second P, practise effectively, should be considered. On the surface, effective practice might appear to mean that the pharmacological and lifestyle interventions discussed above should be implemented. However, in the context of Andrew making his own decisions, effective practice would mean that a patient-focused conversation has taken place with Andrew to discuss all of his options and to identify his preferences. Effective practice would also mean that these decisions are then fully documented, reflecting Andrew’s decision. Addressing the third P, preserving safety, would mean that any potential harm from suboptimal management of risk factors was discussed and addressed. This might include the risk of hyperosmolar hyperglycaemic state (HHS) from raised glucose levels, especially if Andrew becomes unwell and dehydrated; also the potential worsening of his CKD if he chooses not to take an SGLT2i or increase the dose of his ACE inhibitor, thus reducing the cardiorenal protection that might be afforded by these medications. All of the discussions should take into consideration Andrew’s age and comorbidities, but most importantly, his preferences. Another patient in the same position may have entirely different views on all of these issues so it is essential to give each patient the time, information and support to consider their options. Achieving the fourth P – promote professionalism and trust – comes from listening to Andrew, taking note of his concerns and preferences, and then supporting his right to informed, autonomous decision-making. Medicolegally speaking, careful documentation of the issues covered is essential and Andrew also needs to know that he can reconsider his approach at any time in the future. Ongoing monitoring and annual reviews should still be carried out. Clinicians should also consider whether mental health issues such as depression are contributing to the decision to avoid lifestyle changes and medication. Depression is a common comorbidity of many long term conditions and should be proactively discussed, diagnosed and managed.
DEPRESCRIBING IN FRAILTY
Many guidelines discuss the importance of reconsidering targets with frailty in mind. For example, the NICE hypertension guidelines recommend using adjusting BP targets on the basis of frailty and/or comorbidities.6 With frail and/or elderly patients with diabetes, a shared decision-making approach may be taken to allow HbA1c and or lipid levels to remain above target as the risk of treatment outweighs the benefits. Many of the interventions that may be important in young people, such as lipid lowering therapies and glucose-lowering agents, become less valuable at the end of life, especially if the trial evidence is less clear in these sub-groups and life expectancy is short. If an 82-year-old with T2D and an HbA1c of 59mmol/mol is treated with metformin and a sulfonylurea and is home testing their bloods daily and having occasional symptomatic hypoglycaemic events, it would be important to stop the sulfonylurea and the blood glucose testing for the patient’s comfort. It is unlikely that additional treatment would be needed as higher HbA1c targets are acceptable in this age group.7 A statin is unlikely to confer benefit for 2.5 years so unless the patient wants a statin and is likely to live longer than this, a joint decision may be taken to avoid treatment.7 Symptomatic postural hypotension may be more common in this age group so lying and standing blood pressures can help to identify this and ensure people are not overtreated.6 Pain management may be an issue for people at end of life but the side effects of many types of analgesia, including codeine and non-steroidal anti-inflammatory drugs may come with risks that outweigh any benefits or which might require more medication to address side effects which then come with another potential set of side effects. It requires the clinician to have a clear understanding of the risk: benefit ratio of each intervention and an ability to explain it to the patient and their family in order to facilitate a full and open discussion, involving all parties, to ensure the right decision is made for each person. It is important that people recognise that decisions are being made for the right reasons (to optimise quality of life) and not as a cost-saving exercise or because the elderly are not considered to be a priority in the same way as younger people are.
CONCLUSION
The NHS and NICE support the concept of personalised care but at times it can feel challenging balancing this with the recommendations of guidelines and the demands of QOF. In many cases, patients will understand how targets are linked to better outcomes and annual reviews are designed to optimise care. However, in some cases, such as the example given above, age, wellbeing and life expectancy will take precedence over clinical evidence and patients will choose to follow their own path. As long as any decisions, even those that clinicians consider to be unwise, are informed, they should be respected. The NMC Code of Conduct can support nurses to implement patient-centered care through the four Ps. Careful documentation, which includes the rationale for decisions made and the opportunity to reconsider in the future, is important from a medicolegal perspective.
REFERENCES
1. NICE NG121. Shared decision-making; 2021 https://www.nice.org.uk/guidance/ng197
2. Deeny S, Thorlby R, Steventon A. Reducing emergency admissions: unlocking the potential of people to better manage their long-term conditions; 2018
3. Nutbeam D, Lloyd JE. Understanding and Responding to Health Literacy as a Social Determinant of Health. Ann Rev Public Health 2021;42:159–173. https://doi.org/10.1146/annurev-publhealth-090419-102529
4. Smith H, Jones L, Bartholomew M, Snowden M. Straight talking: making health literature equitable. Practice Nurse 2023;53(3):11-14
5. NMC. The Code; 2018 https://www.nmc.org.uk/standards/code/
6. NICE NG136. Hypertension in adults: diagnosis and management; 2023 https://www.nice.org.uk/guidance/ng136
7. American Diabetes Association Professional Practice Committee. Older Adults: Standards of Medical Care in Diabetes. Diabetes Care; 2022:45(Supplement_1): S195–S207. https://doi.org/10.2337/dc22-S013