Learning from Investigations into Peoples’ Preferences for Disclosure of Information

Harding et al (2013) If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psycho-Oncology.

Higginson et al (2013) Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries. Palliative Medicine 0(0): 1-11.

Aim

These papers report on findings from a European telephone survey aimed at investigating peoples’ preferences for the disclosure of information regarding poor prognosis, likely symptoms and problems, and available care options.

Main Findings

In England 77% of respondents would always want to know if they had limited time left. 80% would always want to be informed about symptoms. 91.3% would always want to be informed of their care options.

Across the whole sample 73.9% of respondents would always want to know if they had limited time left. 81.3% would always want to be informed about symptoms. 89.5% would always want to be informed of their care options. However the over 70s are less likely to want to be informed of their time left, care options and possible symptoms.

The majority of respondents would rather improve their quality of life for the time they have left, as opposed to extending their life, if faced with a serious illness like cancer. In England just 2% of respondents would prefer to extend their life, with 65% preferring to improve their quality of life, and 32% judging the two equally important.

In England, care priorities were ranked as follows: 47% felt having pain and discomfort relieved the most important, 25% felt having a positive attitude, 20% felt relatives or friends not being worried or distressed, and 9% felt having practical matters resolved.

Method

The researchers undertook a cross-national telephone survey in seven European countries: Belgium, England, Germany, Italy, the Netherlands, Spain and Portugal. Households were selected through random digit dialling. From a total of 45,242 randomly selected households with a known eligible person, 9,344 people agreed to participate in the study. The questionnaire was developed to include 28 questions on preferences, personal values related to end of life care, experience with illness death and dying, general health and socio-demographics. Preferences were asked in a scenario imagining ‘a situation of serious illness, for example cancer, with less than one year to live’.

Expansion of Findings

In England, 77% of respondents would always want to know if they had limited time left. 80% would always want to be informed about symptoms. 91.3% would always want to be informed of their care options.

There were various factors which affected the way people responded to these questions. People over 70 were less likely to want information of any sort. People with higher educational attainment were more likely to want to know all information. Men were more likely to want to know all information. Those who prioritised quality over extension of life were more likely to want to know about the time they had left, as were those people who had been diagnosed with a serious illness in the last five years or who had experienced the severe illness of a close relative or friend.

The majority of respondents would rather improve their quality of life for the time they have left, as opposed to extending their life, if faced with a serious illness like cancer. In England just 2% of respondents would prefer to extend their life, with 65% preferring to improve their quality of life, and 32% judging the two equally important.

In England, care priorities were ranked as follows: 47% felt having pain and discomfort relieved the most important, 25% felt having a positive attitude, 20% felt relatives or friends not being worried or distressed, and 9% felt having practical matters resolved.

In terms of level of information desired, in England 36% of respondents selected ‘having as much information as you want’ as their priority, 34% selected ‘dying in the place you want’ and 31% selected ‘choosing who makes decisions about your care’. This last figure is particularly important as it shows the desire people have for control over their care, and the utility of Advance Decisions and Lasting Power of Attorney in providing this.

Learning for Compassion in Dying

• Generally, the majority of people in England would want to be informed if they had limited time left to live, what their symptoms were likely to be, and their care options – in a situation where they had a terminal illness with a year or less to live.
• This supports the case for patient involvement in advance care planning, and indeed the full disclosure of information regarding the reality of disease progression.
• However, it is still important to note that there remains a small proportion of people who would not want to know information about their time left to live, symptoms and care options – making sensitive investigation and communication on the part of healthcare professionals vital.
• It is also important to note that the over 70s are more likely not to want to be informed.
• Findings from the VOICES survey indicated that only 32% of patients knew they were going to die. This could impact on a patient’s ability to make informed decisions.
• Respondents would largely prefer to improve their quality of life at the end than extend it, and pain relief is ranked the most highly for people’s care priorities.
• Around of third of respondents prioritised choosing who makes decisions about their care, highlighting the importance of advance care planning.