People at the centre

Page last updated: 12 May 2022

When done well, DNACPR decisions are made with full involvement of the person, their family and/or carer, and take account of people’s individual needs and circumstances.

It is important that any conversations around DNACPR decisions and advance care planning are carried out with kindness and compassion, in line with best practice and people’s human rights. People and their families must be fully involved and listened to, and their wishes considered in any decisions made about their care.

Restrictions introduced in response to the coronavirus pandemic have created additional challenges for health and care professionals in holding these conversations.

We have seen some examples of providers and systems adapting, and continuing to ensure that people and their families or carers were at the heart of any conversations about their care. We have also found evidence where people have not been involved as they should have been, with a huge impact on them and their families and loved ones.

This is reflected in the very different experiences of Jonah and Jim and their families:

The challenges caused by the pandemic

Restrictions on visiting introduced because of the pandemic created challenges in holding conversations about advance care planning, including DNACPR decisions, in some health and care settings. It also hindered the ability of people’s families, carers and advocates to support them or challenge a DNACPR decision if this was needed.

“My relative whilst elderly and infirm, was judged to be able to make the decision during conversations with doctors whilst in a hospital setting. As I was unable to see them due to COVID restrictions, I was concerned that they did not fully understand the ramifications.”
Respondent to our public survey

DNACPR discussions should take place as part of a holistic conversation about advance care planning, and can take place in a variety of health and care settings. Among the 613 people who responded to our public survey, just under half (49%, 298) said the DNACPR was applied in a hospital setting; 31% (189) said that it was applied following a discussion with their GP over the phone; and just over a quarter (28%, 172) said it was applied while living in a care home or in supported living accommodation.

Some providers went to substantial lengths to continue to involve people, carers, family or advocates in discussions about their care. For example, at one acute hospital, during the earlier part of the pandemic, staff and medical students who were freed up from their usual roles helped to staff a contact centre for relatives of patients in critical care wards. As family and friends were not allowed to visit, this created a way to hold important conversations.

One acute hospital continued to allow one person to accompany people with a learning disability or anyone who was vulnerable into hospital. Another hospital continued to allow families to use the relatives’ room if appropriate, to have conversations face-to-face.

Due to the pandemic and the increased pressure on staff time, some professionals we spoke with felt conversations were often taking place at a much faster pace in busier settings. This led to concerns about how meaningful these conversations were, and that some people had or may have been rushed into making DNACPR decisions, or decisions about advance care planning in general, since the start of the pandemic.

Through engagement with our expert advisory group and advocates we heard that relatives often felt these conversations came out of the blue, and would be much less distressing if they were not held at the time of an emergency. We also heard that the huge number of acronyms and use of inaccessible language could be confusing and prevent people from being fully engaged in conversations around their care.

Where providers or systems were using models to guide conversations with people and their families or carers, for example ReSPECT and Coordinate my Care, people tended to have better information to make these decisions. These often happened well in advance of any urgent care, and gave people the time to consider what treatment options were available to them.

Where health and care services were using the same model of care across an area, people experienced a more seamless pathway of care. For example, in one area, there had been an increase in contact from a specialist group of district nurses set up to support adult social care providers. The community nurses were helping to ensure that ReSPECT forms and ‘suitable care plans’ were in place for people.

With the restrictions in place during the pandemic, health and care professionals often sought to support people to have conversations about their care using remote and digital technology. However, this was not always accessible for everyone – see section on ‘Remote consultation and the use of digital technology’ for more on this.

It is worth noting that the National Institute for Health and Care Excellence (NICE) are developing a new guideline on how to make shared decision making part of everyday care in all settings. The guide will promote ways for health and care professionals and people using services to work together to make decisions about treatment and care.

People’s involvement in DNACPR decisions

Everyone has the right to be treated as a partner in their care and to be able to express their wishes about what care and treatment they want to receive.

We found that people and those close to them had mixed experiences of how well they were involved, and supported to be involved, in conversations about their care. This included whether or not they had enough information about, and understood, the implications of what a DNACPR decision means as part of advance care planning.

Health and social care professionals we spoke with said that most of the time the person, their families, carers or advocates were treated as partners in their care and DNACPR decisions.

“The [DNACPR] was put in place at the request of my care client after a chat with the district nurse. My client felt the whole subject was conducted in a frank but compassionate manner that reassured her that her wishes would be respected. As part of her care team we all know she has this in place and it is reassuring for us too to know what we should do to give her the end of life care she wants.”
Respondent to our public survey

This was supported by the findings from our public survey, which showed that 71% (49 out of 69) of individuals with a DNACPR decision in place said they felt completely or mostly supported to participate in a conversation about their DNACPR decision, and that 70% (48 out of 69) of them felt completely or mostly listened to and able to speak up. However, when the survey was completed by the relative or carer responding on behalf of the individual with a DNACPR decision, only 48% (263 out of 544) felt that the person was completely or mostly supported to participate in a conversation and 58% (315 out of 544) of the relatives or carers themselves felt completely or mostly listened to and able to speak up.

However, most areas we looked at were not monitoring DNACPR decisions. This meant that there was not enough evidence available to assure us that people were always being properly involved in conversations about their care or DNACPR decisions. In addition, the results of our public survey raised specific concerns that people from particular equality groups were not fully involved in their care. For example, while 73% (30 out of 41) of people aged 65 and over, 81% (17 out of 21) of people who lacked capacity and 78% (18 out of 23) of people with dementia felt completely or mostly supported to participate in a conversation about DNACPR decisions, relatives and carers reported only 44% (142 out of 325), 44% (66 out of 149) and 50% (96 out of 193) on behalf of these groups respectively.

Our public survey also showed that only 65% (45 out of 69) of individuals with a DNACPR decision in place and 52% (285 out of 544) of relatives or carers felt that their loved one was given enough information about the DNACPR decision. These results are similar to the findings of our reviews of care records – only 42% (65 out of 156) of the records we looked at showed that people had been given enough information in an accessible way, where recorded.

When conversations took place, we were concerned about whether people were being given the right information in a way that they understood, and that they were given enough time to make properly informed decisions.

“The DNACPR was not provided in an accessible format and was not understood by the patient who thought it was a consent form to donate her organs if she were to die. The patient is dual sensory impaired.”
Respondent to our public survey

Some clinical commissioning groups (CCGs) had tried to focus on providing information on the DNACPR process in an accessible format, and support families, GPs and care homes to have advance planning conversations. Health and social care professionals told us that most people had enough time and information to make an informed decision, but it was difficult to be fully assured as we also heard about many examples where this was not the case.

Poor record keeping about DNACPR decisions also meant that we could not always be assured that people, their families, carers or advocates were being adequately involved. For example, in our review of people’s care records we found that 51% (85 out of 166) of DNACPR decisions had been made as a standalone decision – that is, not part of a conversation about advance care planning. Providers and health and care professionals need to ensure that conversations around DNACPR decisions are held as part of a wider conversation about advance care planning. They also need to make sure that DNACPR decisions are not being used in a potentially discriminatory way for people, such as people with a learning disability, who are not near the end of their lives.

Furthermore, we heard that some people had been discharged from hospital with a DNACPR decision that they or their families were not aware of, or that families had been pressured into agreeing to these decisions.

“I only found out about the [DNACPR] when they were discharged from hospital; no-one had mentioned it to me before nor to the person concerned. It was a tremendous shock.”
Respondent to our public survey

“The first we knew about it was a letter from the hospital after my father had been discharged. No conversation was had with us or my father.”
Respondent to our public survey

“I felt pressured to accept the decision of the doctors as they illustrated a terrible picture (i.e. immense suffering of the person) if I did not.”
Respondent to our public survey

This is supported by the results from our public survey which found that 30% (21 out of 69) of individuals with a DNACPR in place and 28% (150 out of 544) of relatives or carers said they were not aware that the DNACPR had been applied.

Indeed, the 2,048 adult social care providers who responded to our information request said that 5.2% (508 out of 9,679) of DNACPR decisions put in place since 17 March 2020 had not been agreed in discussion with the person, their relative or carer. While many of these decisions made during the COVID-19 pandemic had been reviewed in response to national messaging and support, our information request also showed that around a third (180 out of 508) were still in place at the point of our information request (7 December to 21 December 2020). Overall 3.8% (369 out of 9,679) of DNACPR decisions put in place since 17 March 2020 had not been considered as part of a personalised care plan, of which almost half were still in place (48%,177 out of 369) (figure 1).

As a result, people were potentially being denied the opportunity to discuss their DNACPR decisions, advance care plans, and end of life care needs and wishes. This presented a risk of inappropriate decision making and a risk of unsafe care or treatment.

These figures also raise serious concerns that individuals’ human rights – to be involved in DNACPR decisions about themselves or their families – were potentially being breached in more than 500 cases across the adult social care services that responded to our information request. As the majority of people receiving care in adult social care locations are disabled people, including older disabled people, these figures raise concerns about whether the providers making these decisions were at risk of breaching the Equality Act 2010.

Use of blanket DNACPR decisions

Applying a DNACPR decision to groups of people of any description (known as ‘blanket’ DNACPR decisions), is potentially discriminatory and unlawful under the Equality Act 2010. People’s rights may also be at risk where individuals are not properly informed or involved in conversations about putting a DNACPR decision in place, or where decisions are not reviewed in a timely way.

At the start of the pandemic, there were concerns that a combination of unprecedented pressure on care providers, confusion around guidance, and miscommunication may have led to blanket DNACPR decisions being made, or DNACPR decisions that were inappropriate – that is concerns they were being applied to groups of people or made for an invalid reason such as being frail.

Figures from our information request to adult social care providers appear to suggest that the total number of DNACPR decisions increased. Respondents said that, at 16 March 2020, 28% (16,876 out of 59,274) of people in their adult social care settings had a DNACPR decision in place; this increased to 36% (26,555 out of 73,637) in the period between 17 March and December 2020 (figure 2). For nursing homes, this increase was larger, with the percentage of people with a DNACPR decision increasing from 74% (7,009 out of 9,434) on 16 March to 92% (10,647 out of 11,539) from 17 March onwards.

Health and social care professionals told us in our fieldwork that they had not seen any guidance issued to suggest that DNACPR numbers needed to increase or that blanket DNACPR decisions should be put in place. At an organisational level, providers (including acute hospitals, mental healthcare trusts, community services, primary medical services, and adult social care providers) largely told us that they were unaware of the blanket and/or inappropriate use of DNACPR decisions. In addition, one CCG area we looked at had introduced an area-wide policy that there should be no blanket restrictions in either community or acute settings.

However, there were concerns raised about DNACPR decisions in the very early days of the first lockdown. This led the British Medical Association, Care Provider Alliance, Royal College of General Practitioners, CQC and NHS England to jointly remind all providers and CCGs that it was unacceptable for advance care plans, with or without a completed DNACPR form, to be applied to groups of people of any description.

As part of our review, we heard evidence from a variety of people we spoke with that there had been blanket DNACPR decisions in place. This was supported by the meeting we held with advocacy groups. For example, one person told us:

“There was a letter informing of a blanket ban from the clinical commissioning group that COVID-positive people with a learning disability couldn’t be sent to hospital should be cared for at home – this was discriminatory and involved no individual care decisions. Following action, the letter was overturned.”
Advocacy focus group

While responsibility for making DNACPR decisions does not predominantly rest with adult social care providers, it is worrying that 119 (6%) of the 2,048 adult social care services that responded to our information request felt that people in their care had been subject to blanket DNACPR decisions, at any time since 17 March 2020.

During our fieldwork, we were told that there were some blanket DNACPR decisions imposed but quickly revoked, and some were considered but not initiated after discussions with the CCG. For example, in one area we looked at, a GP had sent out letters to care homes for people with a learning disability about putting blanket DNACPR decisions in place, but these letters were retracted following discussions with the CCG.

We also heard from Healthwatch that, at the beginning of the pandemic, many care homes did not have the capacity to consider whether DNACPR decisions had been made appropriately and based on individual needs, as they faced many challenges such as shortages of personal protective equipment (PPE), food and staffing. This suggests that some inappropriate DNACPR decisions could have gone unnoticed. For example, Healthwatch told us about one care home where, at the beginning of the pandemic, everyone over 80 with dementia had a DNACPR applied. Initially the care home had not recognised that was inappropriate and not person-centred, but this was raised with them and addressed.

Lack of clarity on the numbers of DNACPR decisions in place, and lack of data about DNACPR decisions for people in some equality groups, such as people with a learning disability, illustrates the need for better oversight of DNACPR decisions so that local areas can monitor any significant increase or decrease in DNACPR decisions and the reasons why, and ensure that people’s rights are protected.

Equality, the Mental Capacity Act and best interest decisions

Everyone should be involved in decisions about their care, with due regard for their equality characteristics. This is essential to making sure that they are treated equally and feel valued, that they, their family, carer or advocate do not feel coerced into making a major decision, and that their human rights are upheld.

There should be no discrimination in decision making. For example, a disabled person who is not terminally ill should not be treated as being at the end of their life. Someone with a learning disability and other health conditions should not be assumed to have a poor quality of life. In addition, under the Equality Act 2010, providers are legally required to make reasonable adjustments for disabled people. This includes removing any information and communication barriers, so that people can take part in these important conversations.

Our public survey (613 respondents) showed a varying picture of how well people in different equality groups were involved in their care. Respondents included both people with a DNACPR decision (69), and relatives or carers answering on their behalf (544.) Of the respondents with a DNACPR decision, people who lacked capacity, autistic people and people with a physical disability were more likely to feel involved in a conversation about their medical treatment once the DNACPR had been applied. People with a hidden disability or disabling health issue felt least involved. Relatives and carers responding on behalf of individuals said that autistic people, people with a learning disability and people from a Black and minority ethnic background were most likely to feel involved, but people who lacked capacity were least likely to feel involved.

We heard examples of providers making positive changes during the pandemic to help people in particular equality groups, such as people with a learning disability, to make appropriate care decisions. At one trust, senior clinicians were ‘placed at the front door’ to see people on admission and identify who needed additional support in a timely way. Specialist learning disability nurses were also stationed in urgent and emergency care departments.

In another area we reviewed, support was available from specialist nursing teams in hospitals – for example every inpatient with a learning disability was referred to the specialist nurse on admission to support them in their care. The CCG’s website also had information about advance care planning in accessible formats.

We saw some good examples of how clinicians took a person-centred approach to care planning for people who were unable to make advance care decisions for themselves. In one area we heard about an example of a best interests assessment that was done well. This involved the person’s parents, the healthcare professionals and the care workers who cared for them. Together they discussed what the person’s advance care plan should look like, including the ceiling of treatment the person should receive. (A ceiling of treatment is considered to be the highest level of intervention the medical team decides is appropriate, which is in line with the patient’s and family’s wishes, values and beliefs). The healthcare professionals gave their contact details to the care workers so they could be contacted if they needed support and to get advice if the ceiling of care was reached.

However, in other areas we had concerns around whether people’s capacity had been fully considered by the clinician when making decisions about their care. This is supported by our review of care records. Out of the 166 care records we reviewed, 103 showed evidence of a best interests assessment being required. Of these, only 32% (33 out of 103) showed that an assessment had been carried out where appropriate. The remaining 63 care records did not record whether an assessment had been carried out or not, which may be because the person did not need a best interests decision.

In our public survey, only 70% (48 out of 69) of individuals with a DNACPR decision felt that their best interests and capacity were completely or mostly considered. Fifty seven per cent (308 out of 544) of relatives or carers felt that the person’s best interests and capacity had been completely or mostly taken into consideration. For people with a learning disability and autistic people the corresponding figures were 76% (16 out of 21) and 94% (17 out of 18) for individuals respectively; and 70% (69 out of 98) and 81% (57 out of 70) for relatives or carers answering on behalf of individuals.

A lack of understanding about caring for people with a learning disability and assumptions about people’s quality of life were key barriers to involving them appropriately.

One professional informed us that they had found frailty assessments had not been used holistically for children with a learning disability and assumptions had been made about people’s quality of life. The child and/or their family had not always been involved in the discussions.

Conversations and people’s involvement were better when liaison nurses for people with a learning disability were involved and/or the community learning disability team were able to act as a link between the hospital and the care home.

However, in some cases we were concerned about the training for clinicians, professionals and workers leading these conversations. This included whether they had the right knowledge and skills around the Mental Capacity Act and making best interest decisions. As a result, we found that these were not consistently applied. This had an impact on how effectively DNACPR decisions were made. In some cases, assumptions had been made about who could make decisions when someone did not have the capacity to consent themselves, resulting in an advocate not being considered.

More broadly, we were concerned that people might be being discriminated against. One respondent to our public survey said:

“We were alerted by the care home that an attempt was being made to impose blanket DNACPR decisions on all those in care homes in the area. The form emphasised the idea that our loved ones would be more comfortable being looked after in familiar surroundings rather than go to hospital. We felt it was entirely inappropriate pandemic or not.”
Respondent to our public survey

In our public survey, when asked ‘did you experience any treatment during the DNACPR process that you would consider unfair or discriminatory?’, 48% (33 out of 69) of individuals with a DNACPR decision said yes they had; 44% (237 out of 544) of relatives or carers answering on their behalf also said yes.

Health and care professionals we spoke with were not aware of any substantial differences between DNACPR decisions for people in particular equality groups, such as people with a learning disability or older people, compared to the general population. However, they were not always able to support this with data because of a lack of systematic auditing in most areas.

Access to care when DNACPR decisions were in place

Overall, health and care professionals we spoke with told us they were confident that people with a DNACPR decision in place were not stopped from accessing care and treatment. However, around half of the 613 members of the public who responded to our survey did feel that they (54%, 37 out of 69) or someone they cared for (44%, 241 out of 544) experienced delays or had been denied treatment because of a DNACPR. One respondent to our public survey told us:

“I had to fight to remove [the DNACPR] as she was being denied any treatment.”
Respondent to our public survey

In the early days of the pandemic, we heard that ambulance staff had been reluctant, or had refused, to take people to hospital. It was not clear from these accounts if the DNACPR decision had been the sole or main reason behind this. In another area, we heard an example of someone who was kept in the community too long instead of being transferred to hospital.

However, we also found a good example where an ambulance trust we contacted was using assessment tools to tell them the best setting for the person to receive the care and treatment they needed. Following this assessment, the hospital was not always deemed to be the most suitable place and multidisciplinary care would be offered in the community.

Understanding of DNACPR decisions and the ability to challenge

An important part of being treated as a partner in your care is having a sense of control. While health and social care professionals told us people had mostly been involved in conversations about their care, we were less assured that these were done in a meaningful way. This presented a risk that people may not have enough information about what DNACPR decisions are, what the outcomes of those conversations would be, and how to challenge a decision.

Our review has highlighted that health and care professionals, like many people, find it difficult to talk to people and their loved ones about advance care planning. We heard that the way in which health and care professionals sometimes introduced conversations about advance care planning, including DNACPR decisions, could be distressing for people.

A lack of understanding about the DNACPR process, assumptions about people’s quality of life, and poor communication could all affect how well people were involved in conversations about their care. These led to people feeling that they had little say in advance care planning, and DNACPR decisions being made inappropriately.

Conversations with our expert advisory and advocacy focus groups echoed these concerns. They told us there needs to be better awareness among the public about what advance care planning, and DNACPR decisions, mean in practice. We also heard that people don’t know where to go for information and very often they are trying to find this information at a time of immense pressure and distress.

This suggests that clinicians need to improve how they engage with people, and that people need to be given better information at the time the conversations take place. Opening up the conversation about DNACPR decisions, and advance care planning more generally, needs to be done at a national level in the same way as we are now better equipped and more confident to talk about organ donation.

We did find a good example of more positive practice, where the registered manager of a care home told us that the GPs held advance care planning conversations, including discussions around DNACPR decisions, with new residents when they first came to live at the home so they knew people’s wishes from the start.

We were concerned that when people, carers, family or advocates were not happy with the decisions made, they were not always confident in challenging decisions or clear on how to complain. This places people at risk of their complaints and concerns not being heard, acted on and/or resolved. In our public survey, only 61% of individuals with a DNACPR decision (42 out of 69) and their relatives or carers (333 out of 544) knew who to contact to raise concerns around the DNACPR order and process. This was even lower for people with dementia, where only 48% (11 out of 23) of individuals with a DNACPR decision knew who to contact if they had concerns. However, 65% (125 out of 193) of relatives or carers of someone with dementia knew who to contact if they had concerns.

Within all areas we found that individual providers had their own complaints procedures, where necessary, along with signposting mechanisms to relevant organisations if concerns and complaints could not be resolved locally. Health and care professionals we spoke with confirmed that feedback was encouraged, and that their concerns and complaints procedures had continued throughout the pandemic. In most areas, we heard that providers and CCGs had not received any concerns about DNACPR decisions. Where these had been received, we were told they had been managed via the complaints procedure and assurances, explanations and apologies had been made where appropriate.

Some health and social care professionals told us that they were worried that other professionals lacked the confidence to challenge DNACPR decisions, or they didn’t know enough about the DNACPR process to be able to challenge decisions. Barriers included GPs and care workers not wanting to overturn clinical decisions made in a hospital setting, and nursing staff feeling unable to challenge the decisions of senior doctors. In some areas, we found that clinicians, professionals and workers not feeling able or supported to speak up was part of the culture of the organisation.

Moving between services proved a complex time for reviewing decisions. We found some clinicians were reluctant to review DNACPR decisions on discharge from hospital, or to overturn decisions when someone’s clinical condition had improved. We were frequently told by adult social care workers that people could sometimes be discharged from hospital with an advance care plan and DNACPR decision in place that was not relevant for someone living in the community and it needed to be reviewed.

We also heard of an example in one acute hospital where DNACPR forms were not being challenged when a person was moved between acute care settings. Instead, we heard that the conversation would happen again as part of the transition of care. In another example, we found staff had not challenged an inappropriate DNACPR decision when a patient arrived with it in place. While it was removed, this poor practice was not challenged with the other care setting.

Despite this, most CCG and provider leaders and senior professionals we spoke with told us they felt clinicians, professionals and workers would raise concerns or challenge decisions if needed. For example, leaders in one community services provider told us about the various ways they could raise concerns. They told us that their workers were competent and confident to raise concerns, and they had a strong incident reporting culture where concerns were shared.

In other areas we heard how processes, such as Freedom to Speak Up Guardians, were in place for clinicians, professionals and workers to raise concerns. We heard how responsive some organisations were to matters that were escalated through this route. Care staff and system leaders felt the culture in several trusts was very open and people had the right environment to raise complaints and concerns.

Review of DNACPR decisions

Overall, we found variation in whether there were robust systems in place to make sure that DNACPR decisions were routinely reviewed by an appropriate professional when a person moved between services, and/or when there was a change to their health condition.

Responsibility for making sure that DNACPR decisions are reviewed is shared between the clinicians completing the reviews, the senior clinicians and the provider. In some areas we found reviews might not be carried out in a timely way. This was supported by our review of care records, which showed that scheduled reviews had taken place for very few of those people. Review rates were consistently low across all areas, with only 19% (32 of the 166) of DNACPR decisions we looked at being reviewed or having a review date scheduled.

In some areas our review of case records showed that reviews had taken place, but were not always done well. In these cases, DNACPR decisions were extended without talking to the person or other appropriate individuals. This made it difficult for people to challenge the decision once they returned to their usual setting. This was felt by some to be a particular issue for older people, with or without dementia, and people with a learning disability.

A lack of resource at the weekend was also a challenge in some mental health and community hospitals with clinicians not being available outside of office hours to carry out the necessary reviews. This meant that DNACPR decisions would remain in place until a review could take place. This presented the risk that care was not person-centred or in line with the person’s wishes, the agreed ceiling levels of treatment and DNACPR decision if one was in place. This could lead to people receiving inappropriate or unsafe care and treatment.

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