Postproducció

The results of quantitative surveys conducted in the UK suggest that the majority of people agree with view of policy-makers that death and dying are not discussed often or openly enough, and that is would be good thing if this were to change. In a 2012 national survey commissioned by Dying Matters [7], 78% of respondents agreed with the statement: “If people in Britain felt more comfortable discussing

19

dying, death and bereavement, it would be easier to get end of life wishes met”. This varied slightly by age group, increasing gradually from 65% in those aged 18-24 to 89% in those aged 65 and over. In a survey published in 2005, in which 129 people aged 55 to 74 and 127 people aged over 75 were recruited from GP registers in London [114], the majority agreed with the statement: “I wish that death and dying were more openly discussed within society”.

Survey respondents also tended to agree with statements that talking about death was taboo, or something which people felt uncomfortable with. In a survey

commissioned by Marie Curie Cancer Care in 2004 [115], 79% responded ‘yes’ to the question: “Do you think death is a taboo subject for the majority of people in the UK?”. In the 2012 Dying Matters Survey, 71% agreed with the statement, “People in Britain are uncomfortable discussing dying, death and bereavement”. This varied between 59% in those aged 18 to 20 to 78% in those aged 65 or over. The perception that people are uncomfortable talking about death also seemed to generate some concern that this might affect their ability to access support from other people when they might need it; 63% said they would be either very

concerned or fairly concerned that, if they were told they were dying, other people would avoid talking to them about the fact that they were dying [7].

Although there was a common perception that people were uncomfortable talking about death, the majority of survey participants reported that they, personally, were comfortable talking about death. In the Dying Matters 2012 survey, 71% agreed that they felt fairly comfortable or very comfortable talking about death with friends and relatives [7]; which compared with 57% who reported being comfortable talking about sex and 80% who reported comfortable talking about politics. The proportion reporting being comfortable talking about death was up slightly from 68% in a 2009 survey [8], and 65% in a 2006 survey [116]. A survey undertaken in the East of England in 2010 specifically asked how comfortable respondents felt about talking about their own death [117]; 69% reported being either fairly comfortable or very comfortable talking about their own death, compared with 73% who were

comfortable talking about death in general. In all the surveys, a slightly higher proportion of those aged 45 and over, compared to those under the age of 45, reported being comfortable talking about death [7, 8, 116, 117]. In another survey, undertaken in Canada [118, 119], only 9% of 226 participants agreed with the statement that ‘end of life is too sensitive a topic to talk about’. This dichotomy between individuals’ reports of how comfortable they are able talking about death and how comfortable they perceive other people to be has also been observed in

20

other studies. For example, in a study of young people living with HIV and their parents, significantly more young people (67%) reported being comfortable talking about dying than their parents perceived (41%) [111]. In research undertaken in the 1960s, most people reported that they would want to be told if they were dying, yet many also suggested that other people might not want to know [120].

Although the majority of people report being comfortable talking about death, many people in the UK have not talked about their own end of life wishes. For example, in the 2012 Dying Matters survey [7], only 50% of respondents reported that they had told anybody whether they would like to be buried or cremated and only 37%

reported that they had made a will. Prevalence of having a will varied widely by age (from 2% in the 18 to 24 age group to 69% in the 65 and older group) and social class (from 23% in classes D and E to 49% in classes A and B). Other surveys reported very similar findings [8, 116]. Surveys which included participants aged over 75 as a separate category reported the proportion with a will at between 81%

[117] an 83% [8], suggesting that the majority of people who die in old age in the UK have a will at the time of their death.

In a survey of randomly selected households in South Dakota, USA, most

respondents thought that preparation for end of life is very important, yet far fewer had taken any steps to ensure their end of life wishes would be known or met [121].

For example, 71% said it was important to have their finances in order, although only 49% had written a will. Most respondents said that they would prefer other people to initiate conversations about end of life; most often their family or spouse, although some suggested that doctors, members of the clergy friends or lawyers might do this [121]. In focus groups of older people in Sheffield, England, the majority of participants suggested that doctors should initiate discussions of end of life treatment and care with seriously ill patients, and that this might open up an opportunity for patients and their families to talk about dying and death together [122].

Perhaps as a result of so many people not talking about their end of life wishes, 27% of people said that if somebody close to them were to die, they would not know their end of life wishes [7] This varied by age from 36% of those aged 18 to 24 to 19% in those age 65 and older. In addition, 35% said that they would not be able to afford the funeral, ranging from 55% of those aged 18 to 24 to 14% of those aged 65 and over [7]. Unsurprisingly, this also varied by social class, with 49% in classes D and E stating that they would not be able to afford the funeral, compared with 23%

21

in classes A and B. Thirty percent said that they would not know where to go for support if somebody close to them died; again the proportions were higher for younger respondents and those with a lower social class [7].

When asked what would motivate them to plan for the end of their life, the most frequent response was ‘to make things easier for my family’ (61% in one survey [8];

79% in another [117]). Interestingly, in a qualitative study of Aboriginal people in rural Australia, this was also the most frequent reason for advance care planning [123].In the UK survey, smaller proportions said they would be motivated by the thought of getting the funeral they want (8% [8] and 24% [117]) or getting the right care and support while they were dying (14% [7] and 4% [117]).