Innovative new publication uses voices of dying people to empower others to make informed end-of-life decisions

`Compassion in Dying

Compassion in Dying

An innovative new publication from Compassion in Dying launches today (Tuesday 28th November 2017), using the authentic voices of dying people to empower others to make informed decisions about their care and treatment.

 

Compassion in Dying  talked to over 600 dying people and their carers to develop the new booklet, What Now? Questions to ask after a terminal diagnosis, which uses the experiences of real people to support others who have received a terminal diagnosis to ask questions, find the information they need and make the decisions that are right for them.

 

The booklet contains direct quotes from dying people and their carers about their experiences of receiving a terminal diagnosis, living with a terminal illness, the impact on loved ones, and their insights on what to consider when making decisions about treatment and care. It also provides support on how to find useful information, ask questions, make considered choices and plan for the future. The booklet includes removable pages with suggested questions to ask a healthcare team, such as ‘What is my outlook for the future?’ and ‘What will happen to me at the very end?’, with space to take notes. What now? is supported by and available at all Maggie’s Centres, Penny Brohn UK and St Helena Hospice.

 

The resource was developed using insights from people with lived experience of terminal illness. Compassion in Dying received more than 600 responses to a questionnaire for dying people and carers and commissioned BritainThinks to conduct focus groups and in-depth interviews with the public, dying people and carers.

 

A thematic analysis of the research revealed that people were not always given clear information about their condition, nor appropriate support to make choices, nor sufficient opportunities to discuss their treatment options and care needs.

 

Pam Craige, 60 from Cheshire, contributed to the research. Her husband Bill died in August 2013 of chronic heart failure. Pam explained:

“My husband was diagnosed in 2011 and we managed fairly well for two and a half years. Then his health rapidly declined – it was such a shock. The possible complications had never been mentioned to us. We never expected the pain he experienced during the last week of his life. We had been led to believe that he would go fairly peacefully and at home, which was his one wish. The reality was devastating for my husband and it subsequently had a huge and long-lasting effect on me. I felt traumatised.

“If we’d been given clear information about what to expect it could have been so different. We were given little bits of false hope which made us believe he could come home when there was no way he could. I was not emotionally prepared for Bill’s death or what he went through at the end. No one sat me down and gave me information or explained what might happen.”

 

Natalie Koussa, Director of Partnerships & Services at Compassion in Dying, said:

“‘Person-centred care’, ‘advance care planning’ and ‘choice’ have become buzzwords in the end-of-life sector, yet we know from successive policy reports and from people we support that in practice, these ambitions are not always implemented effectively.

“As an organisation that informs and empowers people to exercise their rights at the end of life, we wanted to learn more about the experiences of dying people and the barriers that prevent some from getting the care that’s right for them.

“One of the key findings from our research is that when people who have a terminal diagnosis want more information, they don’t always know which questions to ask in order to obtain it. What Now? aims to address this by empowering people to ask those questions, find out what they need, and make informed choices so that they can live as well as possible in the time they have left. By using the words of people who have experienced terminal illness first-hand, we have developed an easily digestible, approachable resource that will arm others with the tools they need to make the end-of-life decisions that are right for them.”

 

Copies of the booklet are available to download or order here.

What Happens If You Are Left In A Minimally Conscious State? Charity launches campaign to urge everyone to consider making a living will

Compassion in dying

Compassion in dying

Make It Your Decision campaign launched to encourage Brits to ensure their wishes are respected should illness or accident mean they are unable to communicate the kind of treatment or care they wish to receive

UK charity Compassion in Dying are today launching a nationwide campaign to urge people to prepare for the unexpected and make plans about their medical treatment and care in the event they are incapacitated and unable to express their wishes.

According to new research commissioned by the charity, a third (32%) of people said they worry about what care they would be given if they suddenly lost the capacity to make their own decisions, and over a fifth (22%) worry that they’d be given medical treatment they would not want.

As such, the Make it Your Decision campaign aims to stimulate debate around end-of-life care and help people to understand their rights in case the worst happens.

One way to insure against this eventuality is to complete an Advance Decision To Refuse Treatment, sometimes known as a ‘living will’ or ‘advance directive’.

This allows a person to dictate the treatment they would not want to receive in certain circumstances if they were to lose capacity to make or communicate decisions about their medical treatment or care in future.
Compassion in Dying estimates that as few as 4% of people currently have an Advance Decision in place – with research showing that 22% don’t know what one is.

Although more than one in 10 (12%) think Advanced Decisions are not something they need to consider because they are currently healthy, or because they don’t expect anything to happen to them anytime soon (11%), almost half of Brits (48%) agree that an advance decision to refuse treatment would be a way to ensure their wishes are respected, with 23% believing it would help avoid their family having to make difficult decisions.
The benefits of completing an Advance Decision are clear, so why is it that so few of us have done so?
We asked Usha Grieve Director of Partnerships and information from Compassion and Dying.

Patient Talk) So Ousha, what is an advanced decision?

Usha Grieve) An advanced decision allows you to say now if there are medical treatments you don’t want to have in certain situations in the future, in case you later lose the ability to make that decision for yourself. I think a lot of people are surprised when they find out that their family members can’t make decisions for them in that situation, but an advanced decision allows you to speak for yourself when you actually can’t.

Patient Talk) And does it have any force in law, if not should we use a solicitor?

Usha Grieve) It does have force in law, so advanced decisions are legally binding in England and Wales. That means that as long as they are completed correctly, so they’re signed and witnessed amongst other things, then they can’t be overruled by a Doctor or by family members, but there is actually no need to use a solicitor to do it. I think that this is a common misconception and often puts people off because they think the process might be complicated or expensive, but it’s free and there’s free support available from Compassion and Dying to complete the forms as well.

Patient Talk) And what happens if I change my mind? What are the roles and responsibilities of family members?

Usha Grieve) Well you can change your mind at any time and either change the content of the decisions you’ve made within the form or you can revoke it all together. It is a very personal decision after all.

Patient Talk) And what does the medical profession in the UK and America think?

Usha Grieve) The medical profession in the UK are hugely supportive of advanced decisions. It makes a very difficult situation much easier for health care professionals because it means that they are not left having to make a decision for someone who lacks capacity without knowing what that person wants and what’s important to them.

Patient Talk) And what do you say to the argument that this is a halfway house to assisted suicide?

Usha Grieve) An advanced decision just lets you refuse medical treatment in advance. Everybody who has capacity in the UK has the right to do that anyway, so it’s not about ending your life early, its merely about saying there are treatments that you wouldn’t want if you had a quality of life that you found unacceptable.

Dr Sharmila Parks “Advanced decisions are still relatively uncommon. Two examples I can think of are for patients who are still alive. One is for a lady who has cancer. She is elderly and has decided not to have active treatment. She was concerned about seeing a specialist as felt she would be “forced” into treatment. Since making an advanced decision she has felt confident to seek help from specialist services for support knowing that her wishes will be respected if she is unable to communicate them herself. The second was is a gentleman whose relative had had a severe head injury, end up on a ventilator on ITU and sadly died. This gentleman decided that under no circumstances that he would want the same for himself. After discussions about various scenarios he felt he wanted to make an advanced decision to ensure his wishes were known.

Anyone with a condition which would prevent a person either being able to make a decision about their care themselves (had lost capacity) or were unable to communicate their wishes would benefit from making an advanced decision. While conditions such as dementia and neurological illness like motor neurones disease come to mind, sadly anyone could be in this situation due to unforeseen accidents or acute illness.”

For more information please go to makeityourdecision.org.uk.