Plan well, die well – learning from an information service

Executive summary

Compassion in Dying’s Information Line was established in May 2011. It is a unique, national, free information service that helps people to understand their legal rights and choices when making decisions about their treatment and care. This includes providing information on how people can plan their treatment in advance in a legally binding way.

Demand for this service is rapidly increasing – 2014 saw a 40% increase in people contacting us for support and information.

The service

This report examines who contacts us, what they talk about and how we help them. It also demonstrates the importance of our work in empowering people to take control of their care and in facilitating better communication about end-of-life wishes. After contacting us:

• 95% of people felt more confident that their wishes for treatment and care would be respected;
• 76% went on to make an Advance Decision; and
• 95% spoke to somebody else about their medical treatment wishes.

The case for advance care planning

Drawing on results from a YouGov poll of over 3,000 people, this report demonstrates that having end-of-life wishes formally recorded can make a positive difference to the dying person having the ‘good death’ they would want.

The research found that when patients’ wishes were recorded, they were 41% more likely to be judged by loved ones to have died well. Where end-of-life wishes were not recorded people were 53% more likely to receive treatment they did not want.

Crucially, the results showed that formally recording end-of-life wishes has a positive impact on:

• improving end-of-life experiences
• preventing unwanted treatment; and
• helping to reduce avoidable hospital admissions

Enabling person centred care: barriers and recommendations

The experiences of Compassion in Dying’s service users demonstrate significant barriers to enabling person centred end-of-life care.

• Barrier 1: Lack of a formal system for recording end-of-life wishes
• Barrier 2: Lack of awareness amongst healthcare professionals
• Barrier 3: Lack of support to complete advance planning documents

This report makes recommendations on how to address these barriers; policy makers, commissioners and practitioners need to focus on addressing these issues if people are to be supported to plan ahead for their future care in a way that is effective and meaningful.

This report demonstrates the tangible benefits of advance care planning for the patients themselves and the healthcare team that care for them. However, fundamental improvements need to be made in policy and practice in order to ensure that people can complete these documents and that their stated wishes can then be followed.

The information service

Compassion in Dying is the UK’s leading provider of free Advance Decisions. We produce a range of publications for individuals, carers and healthcare professionals. We also provide practical support to help people complete Advance Decisions, Advance Statements and Lasting Powers of Attorney for Health and Welfare.

The Information Line is supported by online guidance through Compassion in Dying’s website. Here service users can access detailed information on end-of-life decision making and can download all of our publications, including a template Advance Decision, free of charge.

Who contacts us

The Information Line currently receives over 260 calls, letters and emails a month. The majority of our callers are individuals phoning on their own behalf (88%), but we also speak to family members, friends and carers (7%), health and social care professionals (3%) and other organisations (2%).

The Compassion in Dying website attracts over 3,000 visitors a month. This service appeals to a younger demographic than our Information Line. Almost half of the people who use the website are under 65, whereas under 65s account for only one in ten callers to the Information Line.

Why people contact us and what we talk about

Many people who contact us have strong feelings about what they would or would not want at the end of life and want to know how they can document this in a legally binding way.

Most commonly, our service users want to understand the steps they can take to ensure their wishes for treatment and care will be respected should they lose capacity in the future. For many, these enquiries are triggered by a recent media story of someone dying in a bad way, or by witnessing the death of a loved one.

My sister and I nursed our mother until she died. Now I am ill and I know my sister is worried that she doesn’t know or won’t be certain of my wishes. Having my wishes recorded would reassure her.

Kate, Information Line service user

Others contact us following a diagnosis of an illness because they want to ensure that, as far as possible, they retain control over their future care. 55% of our service users have an existing medical condition.

Many enquiries are from family members of people who have lost capacity. Often they want to know if they have a right to be involved in discussions about that person’s care or to understand how decisions will be made on their relative’s behalf. We are also contacted by healthcare professionals seeking clarity on a particular issue or requesting information for their patients or service users.

Complex legal and ethical issues are frequently raised. Topics commonly discussed include the ethical issues surrounding the withdrawal of medical treatment, best interests decision-making in the absence of capacity, religious perspectives on end-of-life care and decision-making for people in vegetative and minimally conscious states.

The information we provide

Approximately 90% of people who contact us are sent further information, such as factsheets, publications and template forms.

We currently send out over 240 Advance Decision forms a month and over 10,000 Advance Decisions are downloaded from our website each year.

As a result of contacting the Information Line or using the Compassion in Dying website:

• 95% of people felt better informed about their end-of-life rights and choices
• 96% were satisfied with the information we provided
• 76% went on to tell somebody else about our work

As a result of contacting the information line or using the compassion in dying website:

• 95% of people felt better informed about their end-of-life rights and choices
• 96% were satisfied with the information provided
• 76% went on to tell somebody else about our work

The impact of the information service

Empowering people to take control

After speaking to Compassion in Dying 95% of people felt more confident that their wishes for treatment and care would be respected.

Following contact with the Information Line a large majority of people took practical steps to document their wishes or to appoint someone else to speak for them if they became unable to make decisions for themselves. 76% of those who contacted us went on to make an Advance Decision and 23% made a Lasting Power of Attorney for Health and Welfare.

Facilitating better communication about end-of-life wishes

The benefits of discussing this issue cannot simply be measured by the number of people who go on to complete an Advance Decision form or appoint a Lasting Power of Attorney for Health and Welfare. For many people this may be the first time they have considered what their choices and legal rights are. Discussing these issues with other people is often a first step towards feeling much more confident and reassured about their future care.

95% of our service users spoke to somebody else about their medical treatment wishes after contacting the Information Line; of these people 93% spoke to a partner, family member or close friend, 73% spoke to their doctor, 6% got in touch with their hospital and 19% made contact with a solicitor.

• 95% of our service users spoke to somebody else about their medical treatment wishes after contacting the Information Line
• 93% spoke to a partner, family member or close friend
• 73% spoke to their doctor
• 6% got in touch with their hospital
• 19% made contact with a solicitor

The case for advance care planning

In a poll conducted in May 2015 by YouGov, we asked respondents to think back to the last close relative or friend who died from a short or long-term illness (i.e. someone who should have had planned care) and then asked them questions about that person’s experiences at the end of life.

39% of people felt their friend or relative died in a good way and 47% felt their relative or friend died in a bad way.

20% said their dying friend or relative’s end-of-life wishes had been recorded formally, for example in their medical notes or by making an Advance Decision.

Improving end-of-life experiences

52% of those whose end-of-life wishes had been formally recorded were reported as dying in a good way, whereas, for those whose wishes weren’t recorded, only 37% died in a good way.

The figures show that those who had their wishes formally recorded were 41% more likely to die well.

Preventing unwanted treatment

39% of respondents said that their friend or relative was given medical treatment at the end of life intended to keep them alive, such as cardio-pulmonary resuscitation or artificial nutrition and hydration. 20% of these people felt that the dying person would not have wanted to receive this treatment.

Crucially, for those people who were felt to have received treatment that they did not want, 17% had their end-of-life wishes formally recorded, whereas 26% did not.

So, when end-of-life wishes were not recorded people were 53% more likely to receive treatment that they did not want.

Helping to reduce avoidable hospital admissions

The poll revealed that 34% of those whose end-of-life wishes were not formally recorded were thought to have spent time in hospital that could have been avoided, compared to 28% of those whose wishes were recorded. Even a small reduction in the number of unplanned end-of-life hospital admissions would allow a significant number of patients to die at home or in their usual place of residence¹.

These findings indicate that patients who have their treatment wishes formally recorded are more likely to have a good death than those that do not. They are less likely to be given unwanted medical treatment and are less likely to spend time in hospital that could have been avoided.

If a person is unable to communicate or make decisions and their wishes for end-of-life care are documented, the decision-making process for clinicians is much simpler. With a clear set of instructions in the person’s own words, or with a nominated attorney to decide on their behalf, the healthcare team are not left guessing what that person would want.

As well as the obvious benefits for clinicians and service providers, the positive effect on the individual concerned is clear. In the same YouGov poll, 40% of respondents reported that recording their own end-of-life treatment wishes in advance would make them feel in control and 32% said it would make them feel reassured. Callers to our helpline repeatedly tell us that planning ahead by making an Advance Decision or LPA gives them a sense of reassurance and peace of mind that allows them to get on with living well.

I feel very strongly about this issue and it is such a ‘good’ feeling knowing my wishes have
been recorded.

Sonia, Information Line service user

We know that only around 4% of the ‘well’ general public have an Advance Decision or LPA,² so it is encouraging that 20% of dying patients had their end-of-life wishes formally recorded. However, we still believe that this figure is much too low. More work is needed to ensure dying people can consider and formally record their treatment and care preferences.

Research shows that 82% of people would not want their doctor to make final end-of-life treatment decisions on their behalf: 52% would rather make these decisions themselves, with their wishes written out in advance, and 30% would prefer a family member or friend to make the decision for them.³

Clearly there is real impetus amongst the general population to plan ahead. However the current lack of awareness amongst both the public and healthcare professionals and the lack of practical support available to help people complete these documents is preventing them from doing so.

Enabling person-centred end-of-life care

Compassion in Dying provides an essential service by supporting people to legally record their treatment wishes and complete advance care planning documents. However, fundamental improvements need to be made in policy and practice in order to ensure these wishes are respected.

Responses to our postal monitoring highlighted the following barriers which prevent people from planning ahead:

• Barrier 1: Lack of a formal system for recording end-of-life wishes
• Barrier 2: Lack of awareness amongst healthcare professionals
• Barrier 3: Lack of support to complete advance planning documents.

Policymakers and service providers need to focus on addressing these issues.

Barrier 1: Lack of a formal system for recording end-of-life wishes

When asked what concerned them most about their treatment wishes being respected, 58% of people said their biggest fear was that healthcare professionals would not be aware of what they, as the patient, wanted. It is therefore vital that a patient’s Advance Decision is available to healthcare professionals across all care settings at any time of the day. Otherwise, there is a risk that the person’s legally binding wishes will not be known about when it matters most.

Barrier 2: Lack of awareness amongst healthcare professionals

Respondents to our monitoring reported that 8% of doctors had not heard of Advance Decisions and 3% did not keep a copy of the completed Advance Decision in the patient’s medical records. While this is only a relatively small proportion it is still too high. Not including an Advance Decision in the patient’s medical records severely limits its value.

Furthermore, 15% of our service users experienced a negative reaction to the fact that they had completed an Advance Decision and, significantly, in half of these cases (49%) the negativity came from a doctor or other healthcare professional.

These issues have been acknowledged by Parliament. The House of Commons Health Committee report on End-of-Life Care recognised that more needs to be done to train healthcare professionals in advance care planning and the legal tools available to help patients plan ahead.⁵ This was also reflected in the Government’s response to a House of Lords Select Committee Report on the Mental Capacity Act, which stressed the urgency to:

“…address the low level of awareness among the general public of Advance Decisions to refuse treatment; promote better understanding among health care staff of Advance Decisions…promote early engagement between healthcare staff and patients about Advance Decisions to ensure that such decisions can meet the test of being valid and applicable when the need arises; promote the inclusion of Advance Decisions in electronic medical records to meet the need for better recording, storage and communication of such decisions.”

Barrier 3: Lack of support to complete advance planning documents

29% of service users said that it would have been helpful if a trained professional had gone through their Advance Decision form with them face to face. When we asked members of the public what would encourage them to record their end-of-life treatment wishes, 15% said being able to access face-to-face support from a trained volunteer would help most.⁶

A common barrier cited by our service users to making an Advance Decision or LPA is the complexity involved in doing so. People can feel daunted by the forms. We are working hard to demystify the documents and make them as accessible as possible for all who want to plan ahead.

In addition, the My Life, My Decision project is an outreach service which complements the work of the Information Line and website and meets the demand of those who would like further support in exercising their rights to plan ahead.

Funded by the Big Lottery Silver Dreams fund and run in partnership with seven local Age UKs across England, My Life, My Decision offers one-to-one support to people over the age of 50 who want to discuss their wishes and complete an Advance Decision, LPA or Advance Statement. Early reporting from the project illustrates that, for many, they would not have been able to complete their advance planning documents without the 1-2-1 support provided by the project.

Having this specialist service provided independently, as is the case with My Life, My Decision, ensures that people can have their wishes listened to by a dedicated person with the time and resources to be able to provide full support. Research suggests this is not always something that can be offered by health and social care staff. In a 2014 survey of Royal College of Nursing members focussing on end-of-life issues, 49% of respondents said they did not always have the chance to discuss with patients’ how they would like to be cared for during their final days. Furthermore, where patients wishes were not respected, many respondents cited “lack of time” as a reason for this happening.⁸

References

1 Public Health England (2013) What we know now 2013: New information collated by the National End of Life Care Intelligence Network; SCIE (May 2013) Dying Well at Home: the case of integrated working. Costs of dying at home

2 YouGov, 2013

3 YouGov, 2014

4 Currently, the presence of an Advance Decision is only recorded on a Summary Care Record if the person concerned requests it to be.

5 The House of Commons Health Committee report on End-of-Life Care, (March, 2015)

6 Government Response to report recommendations on the Mental Capacity Act 2005, (March 2015)

7 YouGov, 2015

8 Dying in the UK, RCN survey (November, 2014)