End of life care test

A recent report from the CQC has highlighted where general practice could improve in the provision of end of life care. Dr Rachel Birch, Practice Matters Editor-in-Chief, offers advice on how to put the CQC recommendations into practice.

Many patients choose to spend their last days of life at home. GPs have an essential role to play in ensuring that patients die with dignity and choice, with minimal distressing symptoms and with good care and support for both patients and families. Whilst many GPs may feel that they are already doing their best for patients at the end of life, the CQC has recently published a report that suggests there is still room for improvement.

THE CQC REPORT

The report found that patients from certain groups in society may sometimes experience poorer quality care at the end of their lives, because health professionals may not always understand or fully consider their needs. As part of the review, investigators spoke with patients in these more vulnerable groups to seek their experiences of end of life care.

The review focussed on the following ten groups of patients:

• people with conditions other than cancer;
• older people;
• people with dementia;
• people from Black and minority ethnic (BME) groups;
• lesbian, gay, bisexual and transgender people;
• people with a learning disability;
• people with a mental health condition;
• people who are homeless;
• people who are in secure or detained setting;
• Gypsies and Travellers. 

The review looked at four particular aspects of care:

1. Identification of people likely to be in the last months of life, and communication with these people and those important to them.
2. Coordination of care, particularly for people with complex needs or vulnerabilities. .
3. Timely and equitable access to good care, including 24/7 support.

Care in the last days and hours of life that delivers the five priorities for care of the dying person.

The report found that health professionals did not always have conversations with people early enough about their end of life care. It also stated that in some situations an equality-led approach was not being taken and the needs of the above groups of patients were not being fully identified and met.

GP Recommendations 

• The CQC has recommended that GPs:
• assess and understand the end of life care needs of their local population;
• fulfil their duties under the Equality Act 00;
• ensure practice staff have appropriate knowledge, skills and support;
• follow national guidance on quality end of life care;
• ensure that everyone with a life-limiting progressive condition has the opportunity to have early and ongoing conversations about end of life care;
• provide every patient with a named care coordinator to coordinate services (eg, GP, district nurse, specialist nurse).

At future CQC assessments, the CQC intend to:

• assess the quality of end of life care provided by practices, ensuring it is meeting the needs of all patients, including those from equality groups and vulnerable patients; 

seek evidence that early conversations are being held with all patients to ensure coordinated end of life care.

How can GPs put the CQC guidance into practice? 

Although CQC guidance only applies in England, their recommendations are relevant to practices across all four UK jurisdictions. Their recommendations are consistent with existing guidance. NICE outlines the importance of early recognition of, and communication with, patients approaching the end of their lives and specifically refers to a “comprehensive holistic assessment with the development of a personalised care plan”.

Recognising patients at the end of life 

One of the biggest challenges for practices may be identifying patients who may be nearing the end of life. This will depend on several factors, including how well the patient is known to the practice, what condition they have and whether it is possible to pinpoint when a chronic disease has entered its final phase.

It might be easy to recognise patients in nursing homes or perhaps those with end stage chronic renal disease. Harder to spot may be people with slow-developing dementia or those with mental health problems who do not consult on a regular basis.

The General Medical Council (GMC) states: “Patients are ‘approaching the end of life’ when they are likely to die within the next months. This includes patients whose death is imminent (expected within a few hours or days) and those with:

• advanced, progressive, incurable conditions;
• general frailty and co-existing conditions that mean they are expected to die within months;
• existing conditions if they are at risk of dying from a sudden acute crisis in their condition;
• life-threatening acute conditions caused by sudden catastrophic events.” 

GPs may wish to use the Gold Standard Framework Prognostic Indicator guidance to identify patients who may be approaching the end of life.

Since primary care is multidisciplinary in nature, there may be several health professionals who contribute to an individual patient’s care. GPs, practice nurses, healthcare assistants, district nurses and health visitors may be treating the patient for a range of different conditions. Whilst individually they may not have identified concerns, taking all their experiences together, it may be possible to identify vulnerable and deteriorating patients.

For this reason, good communication with all members of the primary care and community teams is essential. Practices may wish to consider arranging regular multidisciplinary team meetings, so that any concerns can be shared at an early stage.

The value of receptionists shouldn’t be underestimated either. Some receptionists have been at practices for many years and may notice subtle changes in patients that no one else has identified. If your receptionist is worried that a patient is “not as good as they were”, GPs probably should be too.

Encouraging communication with community psychiatry staff such as CPNs and psychiatrists for the elderly may help to identify potentially vulnerable patients at an earlier stage.

Gold standard framework meetings 

The aim of the Gold standard framework is to ensure that all patients nearing the ends of their lives, whether with a cancer diagnosis or not, receive “gold standard” care. It is good practice for all members of the patient’s multidisciplinary team to meet regularly to monitor, record and plan the patient’s care. Emphasis is placed on the control of symptoms, discussion and planning with the patient and their carers, carer support and good communication and coordination, including with other providers such as OOH.

All practice should ensure that they are holding regular Gold Standard Framework meetings and keep minutes of discussions held.

Communication around end of life care 

It can be difficult for any health professional to bring up the subject of end of life care with a patient. GPs are often the first point of contact at this sensitive time and may find themselves dealing with a variety of issues arising from the diagnosis.

At a new diagnosis, for example of metastatic cancer, this may be a huge shock for a patient and their family and it may take some time to come to terms with the diagnosis. It is helpful for GPs to make contact with patients when the initial diagnosis is made, as they are uniquely placed to coordinate care from the beginning and may already know the patient well and therefore be best placed to offer support. It takes sensitivity to get the timing right but, at an appropriate stage, GPs should ensure that patients are aware that their wishes are paramount in providing and coordinating good end of life care.

Equally challenging can be addressing the subject, with a patient with a deteriorating chronic condition, that they are nearing the final stages of that illness. GPs should be sensitive in their approach and ask the patient if they would like a family member present to support them.

Advance care planning 

The GMC’s guidance three indicates that patients are likely to want the opportunity to decide what arrangements are made for the final stages of their illness. It also recommends that if a patient has a condition that might lead to a loss of capacity, their GP should encourage them to think about what they might want should this happen. In addition, doctors should consult patients, where practicable, about their wishes and feelings regarding CPR.

Early discussion about a patient’s wishes may avoid misunderstandings, distress and potential conflict between healthcare professionals and patients. If the patient and family are aware that the GPs and nurses are “on the same page” then this can produce reassurance on any concerns they may have.

Patients may wish to discuss palliative care and how this will be organised. Discussions should cover the patient’s wishes, preferences and fears about their future treatment care and treatment. If the patient wishes family members or legal proxies to be involved in discussions then this should be facilitated. Patients may specifically wish to express a preferred place of care, such as a hospice, and they may identify religious or personal support that they would like.

It is helpful to discuss interventions which may be considered in an emergency, or in the event of deterioration, such as CPR or antibiotics for lifethreatening infection.

The GMC states that doctors must make a record of all advance planning discussions and decisions made. It is good practice to give the patient a copy of the advance care plan and all other professionals involved in their care. This is important so that it is clear what has been agreed.

In particular, if a patient makes an advance refusal of treatment, you should encourage patients to share this with those close to them.

Advance care plans should be reviewed and updated as the patient’s situation or views change. In addition to clinical decisions, patients may wish to attend to other personal matters, such as appointing a lasting power of attorney or making a will. GPs may be asked to assess capacity for such decision making and, if they know the patient well, they are usually best placed to undertake such an assessment.

Training

Advance care planning is a key part of the Gold Standards Framework (GSF). It includes many elements to help people approach the end of their life and can be summarised as:

• what patients want to happen;
• what patients don’t want to happen;
• who will speak for them. 

The GSF offers a range of training programmes to healthcare professionals, aimed at enabling them to optimise the care they provide to patients at the end of life.

Practices should ensure that all staff receive regular training on how to support patients at the end of life. This may be in house or external, but should be documented in staff members’ training files.

Good end of life care

Although many GPs are already delivering high quality end of life care to their patients, it is important to ensure this good practice is documented. One way of doing so is to develop an end of life practice policy, which outlines the processes and systems in place to support patients and ensure their needs are met at this very important stage of their lives. The policy should include:

1. Early identification of patients.
2. Consideration of potentially vulnerable patient groups.
3. Coordinated care within the healthcare disciplines.
4. Early and regular conversations with patients and their carers about their wishes.
5. Training for all staff members.

More support for you

Conversations with patients around end of life care can often be difficult. Our FREE workshop on Mastering Shared Decision Making can help. Facilitating conversations effectively can result in more informed and appropriate decision making for patients. It can also increase a patient’s sense of ownership of the decision leading to better acceptance of unexpected or unwanted consequences after an adverse outcome.

References

CQC. A different ending: Addressing inequalities in end of life care (2016).  

NICE. End of life care for adults. Quality standard 13 (2011).

GMC. Treatment and care towards the end of life: good practice in decision making (2010).

The Gold Standards Framework Prognostic Indicator Guidance (2011).

The Gold Standards Framework