Key points
- There was a wide range of training available across organisations, including training on the Mental Capacity Act, Deprivation of Liberty Safeguards and advance care planning.
- However, we were concerned that not all clinicians, professionals and workers had access to this due to a lack of funding and difficulties freeing up time to attend training sessions.
- Where staff had training, there were concerns about whether it was giving them the necessary knowledge and skills to engage with people in a meaningful way, and ensure that their needs were met and their rights protected.
- Clinicians, professionals and workers sometimes lacked the support to make difficult decisions, with some people turning to advocacy organisations for information and guidance.
- Clinical commissioning groups and local health and social care providers don’t have a complete oversight of decision making around DNACPR decisions.
Good training should provide health and care professionals with the knowledge, skills and confidence to talk to people and their relatives or carers about advance care planning.
This may include what level of care and treatment they want to receive at the end of their lives. It should help professionals to make sure that they are holding these conversations at the appropriate time and that they always take a personalised approach, which puts people at the centre of their care and ensures that their human rights and rights to equal treatment are protected.
Our review has highlighted concerns around how well these conversations are taking place, if at all, and whether clinicians, professionals and workers are receiving the right training to enable this. This includes access to training, the quality of the training available, and whether training gave them the confidence to challenge inappropriate DNACPR decisions.
Amelie’s story
Amelie told us about her experience of losing her father, John, during the pandemic. John was a fit and healthy man in his 70s; he lived a full and active life. John became unwell and went to hospital for a series of tests. He received a call from the hospital telling him he needed to attend for an urgent appointment because they had found a blood clot and he needed blood thinning medication.
John went to this appointment expecting to receive this treatment, but instead he was told he had a tumour. He was alone at this appointment because relatives were not allowed to attend due to COVID-19. He was given a completed DNACPR form and was sent home in a taxi. Yet at this stage the tumour had not spread and was not terminal.
Amelie told us how this had made her father feel, “He was scared, it made him panic, it made him think he was going to die really soon”. He told his daughter he was a “goner.”
The DNACPR decision had not been made as part of an individualised advance care plan for Amelie’s father. No discussion had taken place about the decision, the reason for the decision or what his options for treatment were. It wasn’t done in a sensitive, compassionate way.
Amelie’s father later died from his tumour. The experiences of how frightened her father was after his diagnosis stay with her and she told us how she felt she had failed her dad because she wasn’t with him and couldn’t stand up for his rights when he needed her to.
Amelie told us, “These decisions that are made by doctors, they don’t die with the person, they live on.”
Availability, access and effectiveness of training
The majority of staff we spoke with felt that they had the training needed to make sound clinical DNACPR decisions. However, we were concerned that they did not always have the necessary knowledge and skills, or were not trained to the required standard. Our concerns were echoed at our advocacy focus group where we heard that, for example, “a lot of the staff think they know about the Mental Capacity Act, but don’t have the depth of understanding they need”.
We heard that there was a wide range of training available that related to advance care planning, though the offering varied depending on organisation or area. Courses available included training on the Mental Capacity Act (MCA), Deprivation of Liberty Safeguards (DoLS), safeguarding, advance care planning and end of life care. The latter included topics such as palliative care and having sensitive conversations about death. We also heard that there was specific training available on DNACPR decisions and the ReSPECT process.
In many organisations, some of the training programmes were required by the employer and had been since before the pandemic. In others, training had been rolled out after the start of the pandemic. We also heard about new training that had been developed in response to the pandemic. For example, in one area, the clinical education leads worked with frontline staff to train them on how best to start advance planning conversations during a pandemic, and how best to hold them when restrictions meant they had to be done at a distance (such as over the phone).
In another clinical commissioning group (CCG) area, we found a range of opportunities available. This included round table events, buddy schemes for GPs, and palliative care education webinars. These were part of the CCG’s incentive scheme, which also included training on the Mental Capacity Act and discussions around DNACPR decisions.
While there was a wide range of training available, we heard concerns that not all clinicians, professionals and workers were able to access it. Reasons for this included a lack of funding and difficulties freeing up time to attend training sessions. This affected staff from all sectors. In one of the areas we reviewed, the CCG decided to make advance care planning training available free to frontline staff, with a good uptake as a result.
We also heard that there was less focus on training for clinicians, professionals and workers during the pandemic because of the pressures that services were facing. This is despite the fact that there was increased interest in advance care planning from staff at the beginning of the pandemic. In one area, local leaders said that doctors in acute hospitals in particular wanted training on advanced care planning and DNACPR discussions and decisions. In one area we heard:
“They are frightened of getting it [advance care planning] wrong. They have resuscitation training, but no training relating to the conversations around whether resuscitation is appropriate. That topic needs to be expanded."
Without appropriate training, health and care workers may not be aware of when it is, and is not, appropriate and lawful to be holding discussions about DNACPR decisions. This includes whether it may potentially be discriminatory for people in some equality groups, for example people with a learning disability, who are not at the end of their lives.
Not having a good understanding of advance care planning, the Mental Capacity Act, and the DNACPR process, can lead to issues such as people being assessed as having capacity when they no longer do. It can also lead to clinicians making decisions for people in particular equality groups, such as people with a learning disability and older people, that are not appropriate or are based on assumptions about their quality of life. It also puts clinicians under pressure and creates a fear that they may be held to account if something goes wrong.
We were concerned that where health and care workers, particularly those in care homes, did not have the training they needed, they would not be able to identify concerns or issues with incorrectly completed documentation. In addition they may not see it as their responsibility to challenge an inappropriate DNACPR decision, or feel confident in raising concerns where they identified problems. This means that people may not be protected from unsafe care or treatment, and may be at risk of having their human rights breached.
Support for staff
Overall, most senior leaders we spoke with felt that there was enough support for frontline staff to follow good practice when making difficult decisions in pressurised circumstances and complex busy settings. However, there wasn’t enough evidence to determine if the support that clinicians, professionals and workers received was effective or happened at the right time.
We heard that meetings and forums took place in many different forms, including clinical forums to discuss complex cases, daily and weekly staff meetings to discuss cases and issues, and safeguarding panels.
In one area we looked at, a buddy scheme with hospital matrons and care homes had been put in place before the pandemic to help connect hospitals and care homes. Since then, a ‘Flying Squad’ team from a hospice supported adult social care homes with emotional and educational support and advice and guidance. Another area had rapidly developed an end of life hub to provide support. We were told this had been positive in giving professionals advice when needed.
In two of the areas we looked at, we heard there was an on-call team of senior professionals that health and care workers could call for advice and guidance, and discuss complex decisions with.
However, the advocates we spoke with raised concerns about the effectiveness of training, and queried the level of support for clinicians, professionals and workers. Their organisations often received calls from health professionals seeking advice on the Mental Capacity Act, advance care planning, and DNACPR decisions. One advocate told us that they had ended up creating a guide to advance care planning, which they shared with local health professionals, because of the volume of enquiries that they were receiving. This brings into question both the effectiveness of training the health professionals had received, and the level of support they were receiving in their respective organisations.
Other advocates told us that they do a lot of awareness raising with providers, with some describing how they had been involved with delivering training on the Mental Capacity Act and advance care planning to health professionals.
Oversight of training and decision making
While we found evidence of training and development around advanced care planning and DNACPR decision making, in most cases the training had not been evaluated. This meant that they were unable to show how training had improved people’s experiences.
One area used their engagement with the Learning Disabilities Mortality Review (LeDeR) Programme to make improvements. This programme looks at why people are dying, and what can be done to change services locally and nationally to improve the health of people with a learning disability and reduce health inequalities. Being part of the programme had helped the CCG to actively identify the need for additional training in DNACPR decisions, Deprivation of Liberty Safeguards, the Mental Capacity Act and mental capacity assessments. This was viewed positively: that there were systems in place to identify shortfalls and action was taken as a result.
When applying a DNACPR decision, responsibility for ensuring this is done properly should rest with the senior responsible clinician, as defined by local policy. Providers should then be responsible for auditing DNACPR decisions at a local level. There appeared to be a perception that if somebody had received training, they would be able to make decisions in line with best practice and legislation, but we heard little about oversight and monitoring of practices related to DNACPR decisions.
For example, at one acute hospital our review of case records found that some of the DNACPR decisions that had been made by junior doctors had not been countersigned by a senior clinician.
This raises questions about the level of support that some frontline staff had been given to manage the pressures brought on by the pandemic and be in a position to follow relevant guidance. This includes, for example, guidance set out by the British Medical Association, Resuscitation Council UK and Royal College of Nursing.
We found evidence of mechanisms in place to support clinicians in making complex decisions and for seeking advice. While these had been effective in part, they did not give local leaders complete oversight of the pressures that services were under, or any additional support that clinicians, professionals and workers may need. This presented a risk of staff working without the support and capacity they needed to work fully within the required guidelines and legislation, all of which outline key ethical and legal principles that should inform any decision.
As a result of our findings, we were concerned that there aren’t processes in place to monitor decision making around DNACPR decisions across local areas, and ensure that health and care workers have the relevant training. This meant they would not be able to identify any additional support that they may need. Without proper oversight, systems could not be sure that clinicians, professionals and workers were being supported to keep their professional practice and knowledge up to date in line with best practice, and to work within this. This is an area that needs rapid evaluation given the issues we have identified with staff knowledge and understanding. It is also pivotal to the development of end of life strategies at a system-wide level.
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