Response rate

The response rate of 71% is roughly in line with the response rates of other Irish telephone surveys on sensitive topics. Two studies by the Royal College of Surgeons, for instance, used this methodology in their research on sexual abuse and violence in Ireland and returned similar response rates (71% and 76%, respectively).19 20 On the other hand, our study is similar in method to a UK study by Professor Irene J. Higginson in 2002.21 Higginson's report of the study does not explicitly address the response rate, but like ours, her study formed part of a national survey that included other issues. In Higginson's study, it seems that none of the 1000 adults who responded to the survey overall refused to answer the questions concerning end-of-life care. Reasons for the difference in the response rates (100% for Higginson and 71% in ours) can only be speculative; perhaps, the way in which the topic of end-of-life care was introduced to the people who participated in the survey differed. Breaking down our responses, we found that the youngest age group were most likely to refuse to participate (39%), and this is consistent with previous research in this area.22 It is also possible that a wider societal discomfort with discussing death exists: the qualitative study carried out to inform the development of the questionnaire reflected the view that death was not a matter openly discussed; one respondent summed this up stating “you know what is going to happen to you but you don't want to talk about it”.17

Experience and understanding of death

Despite the fact that more than half of the respondents had experienced the hospitalisation for serious illness and/or death of a loved one and that a tenth of them had been hospitalised themselves, the respondents largely had little or no understanding of end-of-life treatment and care terminology. This finding is consistent with other studies,7 17 one of which found the Irish public's knowledge and awareness of various bioethical areas to be quite limited in most instances, with most claiming to know “just a little or nothing” about end-of-life issues.7 Specifically, most people (71%) had never heard of the term advance directive. Although the term living will appears to be in more common parlance, nearly half of the respondents knew nothing about the term or had never heard the term before. This is consistent with earlier Irish research in this area.16 Awareness of the term postmortem was the highest among the ten terms tested. Notably, in the recent past, in Ireland, there has been much focus on the topic of postmortems since it became apparent that the organs of many deceased children had been retained after postmortem without parental knowledge. The issue culminated in a government report23 and received widespread media attention.

Information on terminal illness

International research on patients', families' and health professionals' views, experiences and practices in relation to the disclosure of bad news indicates that the Western world has seen a significant shift from a paternalistic tradition, where knowledge of and authority over medical decision making was assumed by clinicians, to a culture where patient involvement in decision making is viewed as best practice. In Ireland, several recent studies indicate that attitudes towards disclosure of bad news are changing among the general Irish population and among health professionals.8 9 16 24 The findings of this study confirm that most people, if seriously ill, would want to be told the truth about the diagnosis and the prognosis, either alone or in the presence of their families. These results are broadly similar to the results of previous Irish studies.9 25 However, it appears that some people still prefer not to be told at all of a diagnosis of serious illness. For instance, in our study, 3% of the respondents would not like the information to be told to anyone (including themselves) if they were to be diagnosed as having a terminal illness and 4% would prefer a family member to be told first. This is also consistent with national and international research9 26 27 and indicates that decisions relating to breaking bad news should be informed by patients' own preferences. One way of establishing patient preferences in this regard is to ascertain them when patients first arrive in hospital.9

Decision making on terminal illness

Most of the respondents indicated their belief that families, either alone or with physicians, have the authority to make decisions about starting or stopping treatment for incompetent patients. While Irish law supports the right of competent patients to make healthcare decisions, the public is mistaken in the belief about the rights of the families of incompetent patients. Currently, in Ireland, family members have no legal standing in relation to decision making for incompetent adults. The current legal stance is that “while hospitals may routinely seek the consent of the ‘next of kin’ in relation to healthcare decisions, this consent has no legal basis. The lawfulness of healthcare decisions about these patients depends on whether the decisions are in the best interests of the patient and, in practice, this decision devolves to the lead clinician” (Donnelly, personal correspondence, 2009). It is only when there is conflict between families and professionals that questions about end-of-life care are referred to the Irish courts.28

The lack of clear legal guidance can create difficulties for health professionals especially in situations of family conflict. However, the Law Reform Commission has recently called for the introduction of advance directives in legislation,29 30 and following on the commission's 2009 report, a mental capacity bill is due to become law in 2010, which will, hopefully, clarify who has the authority to make decisions and how those decisions might be made. In addition, recent guidelines from the Medical Council of Ireland advise physicians that advance treatment plans of patients who lack capacity should be respected if they meet certain conditions and family members may be consulted where possible.31

Meanwhile, the findings of this study underline the need to inform and educate the general public about the process of decision making in relation to incompetent patients and the need to legislate in this regard. In turn, practice and law should take into account the findings of this and similar studies that reflect people's preferences for family involvement in end-of-life decisions.

The living will and its role in decision making

Although not directly comparable, one previous Irish survey16 found that 14% of Irish adults have told someone where they would like to be treated if they became terminally ill (eg, hospital, home, hospice), 21% had told someone what they would like at their funeral and 46% had told someone whether they would like to be buried or cremated. Previous surveys on the topic of living wills or advance directives suggest that the 5% of our respondents who acknowledged that they had written a living will is relatively low. In 2004, for instance, 14% of a representative sample of the Irish public stated they had written an advance directive or living will,16 and 11% of the participants in a 2007 Irish Council for Bioethics consultation said they had actually written up a document concerning their future medical care.8 A question in the Irish Council for Bioethics (2005) survey found that 39% of Irish adults strongly agreed with the statement “Advance directives should be legally binding in all circumstances and take precedence over the wishes of a patient's next of kin and their physician's advice”.7 Others were less sure of what the legal standing of an advance directive should be. However, caution should be exercised in making direct comparisons owing to differences in wording and methodology across the three surveys. Given that nearly half of the respondents to our survey knew little or nothing about living wills and most of them had never heard of the term advance directive, it is not surprising that so few had actually completed one.

As indicated in the previous section on decision making, living wills do not, currently, have any status in Irish law, and their uncertain status may explain why so few people in Ireland think that they might be important to complete. It is to be hoped that increased awareness and the eventual introduction of legislation giving legal status to advance directives will encourage the general public to consider the role of planning in the care of dying patients.

Attitudes towards death and dying

Most of the respondents agreed that competent individuals have the right to refuse medical treatments even if this decision results in their death. Most of the respondents also placed emphasis on the quality of their life rather than on its length, and they indicated that they feared being helpless and dependent more than they feared death. Both these responses mirror results previously obtained in the UK in response to identical questions.4 However, when correlated with age, the findings indicate that more of the very old and the very young want to be kept alive at all costs. The reasons for the age differential are unknown. Given that younger people were more likely to refuse to participate at all in the survey, it is possible that they have not seriously considered the process of dying and death and, so, cannot imagine circumstances where life would not be preferable to death. It is possible that religious belief may be an influencing factor for the older group. That spiritual and religious support would be important attracted a large amount of agreement particularly by those aged >65 years and is again in line with the results obtained in the UK.4 Although one previous study found that there was a relationship between certain death-related attitudes and church attendance in the UK,32 the impact of religion on end-of-life beliefs has never been explored in an Irish context. In our study, the correlation between respondents' level of religious commitment and their responses to the attitudinal statements indicate that 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. The age stratum is representative, and no significant differences emerged for the middle-aged group. Considering that 3.9 of 4.2 million people supplied a religion in the 2006 Irish population census and that 87% of respondents in our study stated that religious beliefs were important to them, the impact of religious belief on death-related attitudes in Ireland presents an important area for further research.