Dr. Regina McQuillan:

I thank the committee for the invitation. Members will have received copies of my oral presentation and a written submission. I shall go through my oral presentation but perhaps not word for word, just the main points.

There are a number of issues relating to Travellers and how they might die well in Ireland. First, Travellers are a minority group in Ireland. There are about 36,000 Travellers - that is, less than 1% of the population - which creates issues such as how to maintain staff awareness, through training and education, in order for staff to deal with people they encounter infrequently. One of the pieces of information that I have drawn on is the All Ireland Traveller Health Study, Our Geels, published in 2010. The study covered North and South and examined Traveller health issues. The findings were as follows: 75% of Travellers in the Republic of Ireland lived in family units of five or less, which is not our traditional idea of them; 73% lived in a house, most of which were local authority; and 18% lived in a trailer, mobile home or caravan; in the previous year of the study 78% of families had not travelled; 28% of families reported difficultly reading or filling out forms. When it came to coping with life, 98% of the Travellers surveyed were Catholic and most said that their religion was very important to them; 40% of Travellers, a percentage recognised by Mr. Allen, felt they had been discriminated against; and Travellers sometimes hid their identity, called "passing off", when they felt they were going to be discriminated against when receiving services or accessing social activities.

Traveller societies can be considered collectivist rather than individualist. In Traveller society the wishes of the community are sometimes as important, if not more important, than the wishes of the individual. In collectivist societies large crowds tend to gather at times of family crisis. That means that for family gatherings such as weddings and funerals, large crowds may attend, sometimes in the hundreds, which causes disruption and unease among the settled community. At times of serious illness large crowds can gather and it is not unusual to find over a hundred people wishing to visit a person who is dying.

Travellers have poorer health than the general population. The health study showed that Travellers have a higher rate of doctor-diagnosed illness than the settled population, including chronic bronchitis and asthma. The study showed that Travellers had access to health services and most Travellers had a medical card. However, Travellers are more likely to use accident and emergency departments at a higher rate than the settled population. They also have poorer follow-up from hospitals than the settled population.

An important factor to point out is that Traveller life expectancy is much shorter than that of the settled population. The male Traveller life expectancy is 61 years, a statistic that has not improved since 1987 and equals the life expectancy for the settled male population in 1945. Female Traveller life expectancy is now 71 years. That is an improvement on the 1987 statistics and is the same as the life expectancy for the female settled population in 1960. The causes of excess mortality among the Traveller community appear to be mainly respiratory and cardiac disease, particularly respiratory disease, and external factors such as accidents and suicides.

I was involved in research carried out by Dr. Onja Van Doorslaer into the use of palliative care by Travellers. At the time I conducted research into the Eastern Regional Health Authority. It is important for us to remember that Travellers believe it is unlucky to talk about serious illness and approaching or impending death. Travellers are reluctant to discuss serious illness and believe discussing the matter will bring bad luck. As I said earlier, when a person is seriously ill in the Traveller community it is custom for families to visit. A Traveller's close family can comprise hundreds of people, whereas a settled person would consider close family to amount to between ten and 20 people. There may be added distress if staff do not understand the importance of large numbers of visitors for a very sick Traveller. Travellers tend to be aware that the gathering of a large crowds in such settings causes upset to health care organisations. Sometimes the health care organisation manages the matter by calling security and restricting the number of visitors, but that can cause difficulties. It is important to identify the key people in the Traveller group. Perhaps members of the Travellers community or religious communities could be asked to liaise between the health care organisation and the Travellers.

Travellers view hospitals as places of hope where a cure is possible. Travellers involved in the study had experienced hospice care but were not keen on it and considered a hospice a place of last resort. They felt that recognising approaching death through the use of a hospice was not appropriate. The research showed that Travellers felt more positive towards community palliative care because it allowed people to remain at home for longer. However, dying at home is unacceptable among the Traveller culture. Dying in hospital is considered most appropriate. Death at home is unacceptable because Travellers will say that great sadness will be associated with the place of death. In the past the caravan or trailer in which a Traveller had died would be burned. That no longer happens, but that is more for economic reasons. Nowadays, in cases in which Travellers live in a house but somebody dies in it, his or her family will move away and not return for a number of months until the house has been redecorated and blessed. Similarly, when a Traveller dies in a trailer, attempts will be made to sell it off, but Travellers do not buy trailers in which a person has died.

With regard to Traveller traditions associated with memorialisation, funerals are normally arranged by Traveller men. Nowadays Travellers tend to be buried in the place where they have lived, because most of them no longer travel. However, conflicts can arise between the desires of the original family and that of the family of marriage on the location for burial. As I said earlier, death is an important event in such a collective society so hundreds of people may attend the funeral, thus leading to tension among the settled community.

Travellers do not always cope well with grief and bereavement. Sometimes small societies tend to view a death as a great loss. Many people use alcohol as a way of coping and Travellers are aware that such action is not necessarily a useful coping mechanism.

With regard to planning ahead, even though it may be said, it is really important that a patient has a good understanding of his or her situation, gives informed consent, plans for the future and participates in care planning, perhaps even plans in advance. Many societies do not want to think too far ahead. That is definitely true for the Traveller community, and for many Irish people whom I have dealt with; they find planning ahead and thinking about death quite difficult. I am involved in developing advance care planning and it is important to recognise that advance care planning should be patient-led and done with patient agreement, rather than a requirement. Many people want to live day-to-day and leave the matter in God's hands.

We must consider ways of reducing mortality rates among Travellers. I will outline the recommendations made in the All Ireland Heath Study. Accessible information for health care workers on caring for Travellers needs to be made available. Perhaps this can be done in a straightforward manner using the Internet or an app. We must also maintain our focus on care for people with a life-threatening illness, improve their present care and quality of life and, if the patient so wishes, be open to the idea of advance care planning. I thank the committee for listening.