A sense of denial over the facts of end of life

 

A recent survey reveals that many of us are ill-informed about dying and the end-of-life decisions involved, writes FIONOLA MEREDITH

IT SEEMS THAT, when it comes to death and dying, most Irish people adopt a head-in-the-sand approach. According to a new national survey, just published in the Journal of Medical Ethics (JME), many of us are uncomfortable and ill-informed about end-of-life issues.

Lead researcher Dr Joan McCarthy, of University College Cork, found that there is a deep need for better public education about the processes and terminology of end-of-life care, as well as for new legislation to clear up the confusion around the role of professionals and families in making decisions for dying patients.

Given the grim topic, it’s not surprising that so many of us shy away from it. When they were told what the subject matter was, 300 out of the original 1,046 respondents walked away from the survey.

As one respondent put it: “You know what is going to happen to you but you don’t want to talk about it.”

One of the most striking parts of the research concerns the moment that a terminal illness is diagnosed. When asked if they would prefer to hear the bad news on their own or with someone present, most respondents (57 per cent) said they would prefer to be told on their own, followed by 35 per cent who wanted to be told in the presence of their families.

Four per cent of people wanted their families told first, while 3 per cent didn’t want the news disclosed to anyone – including themselves.

Why would this be? Speaking from a personal point of view, Paul Murray, of the Irish Hospice Foundation (IHF), says that there could be a number of factors at play.

“Perhaps it’s so momentous a thing that they just want to blot it out, or maybe the person is thinking of those they will leave behind and the effect it will have on them. Or it could simply be down to an unwillingness to face up to the decision-making process involved in end-of-life care.”

End-of-life decisions, it seems, are an emotional and legal minefield. Most of the respondents expressed their belief that families, either alone or with physicians, have the authority to make decisions about starting or stopping treatment for patients unable to choose for themselves. But as the current law stands, family members have no legal right to make decisions for incompetent adults.

While hospitals may routinely seek the consent of the “next of kin” in relation to healthcare decisions, they are under no legal obligation to do so. As the article points out, the lack of clear legal guidance can create real difficulties for health professionals, especially in situations of family conflict, and it calls on the Government to act to address this uncertainty.

The researchers tested respondents on their knowledge of end-of-life terminology: terms such as “advance directive”, “palliative sedation” and “persistent vegetative state”. Overall, the awareness levels were low. For instance, 71 per cent had never heard of an “advance directive”, although more people knew of it by its more popular term, the “living will”.

Regarding the treatment they would require if they were suffering from a terminal illness themselves, 22 per cent of respondents said they had told someone – such as a family member or their doctor – how they would like to be treated if they were dying. However, living wills do not have any status in Irish law; as the researchers speculate, that could be one of the reasons why so few people have bothered to make one.

Most people “were more concerned about the quality of their dying than about death itself”: 81 per cent said that if they were severely ill with no hope of recovery, the quality of their life would be more important than how long it lasted.

The researchers found that religion may be a significant factor here. “Those who are religiously committed place a high value on life, reject the right to refuse treatments that might forestall death, respect medical authority and value spiritual support in their end-of-life care.”

They also noted that those who placed greatest value on length of life were most likely to be aged between 18 and 34, or to be over 65 – the very old and the very young, it seems, want to be kept alive at all costs.

The onus is on State agencies and professional bodies to make sure that the general public is better informed about the processes and decisions involved in end-of-life care – that’s the fundamental message coming from the findings.

“We regard this as another indication that there is a huge education job needed,” says Paul Murray of the IHF, which commissioned the report. “It’s extraordinary that so much time is spent educating people about birth and sex, but so little about this equally profound thing that happens to everyone.

“Although it’s often discussed in religious terms, it’s a profound experience for everybody, regardless of whether they are secular or religious. We really need a national conversation about end-of-life care”.