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Column: Dying with dignity is a right, not a privilege

We all hope for a good death – but in the current system not many of us will get one, writes Sharon Foley of the Irish Hospice Foundation.

Sharon Foley

OUR NEWS BULLETINS in recent months have been filled with stories and images of people dying in tragic and violent circumstances at home and abroad. But is it ever possible to secure a “good” death? And what would a good death be?

The first national study on the subject, commissioned by the Irish Hospice Foundation (IHF) in 2004, found that two thirds of people wanted to die at home. They wanted to be pain free, conscious and able to communicate. Only 10 per cent opted to spend their final days in a hospital and a similar number wanted to die in a hospice.

So what is the reality?

Some 27,144 people died in Ireland in 2010, of which around seven out of 10 people died outside their own homes. About half of Irish people die in a hospital. The survey also revealed that over 80 per cent of people believed that hospital care for people who were dying or terminally ill needed improvement.

A critical issue that has to be tackled as a matter of urgency is the physical environment of our hospitals. The reality is that unfortunately, within the hospital setting, all too often, people are dying in open wards without any privacy.

After a review of 15 acute and five non-acute hospitals, an independently commissioned IHF report in 2007 recommended that accommodation in all new hospital buildings should include at least 50 per cent single rooms in order to enhance privacy, confidentiality and dignity. Most of the limited number of single rooms in our hospitals are currently used for infection control and are not available for the dying.

It should be said that despite this lack of single rooms, evidence from the national audit, which was conducted by the Hospice Friendly Hospitals  Progamme of the Irish Hospice Foundation, suggests that ward staff go to extraordinary lengths to try to arrange private space for people in their final hours. The national audit found that 33 per cent of patients spent most of their last week of life in a single room and 44 per cent died in a single room.

The dying process

Providing single room, ensuite accommodation would allow family and close friends to be with the person who is dying without intruding on other patients. Families could eke out every last hour with their loved one by being able to rest in the room. Confidential discussions would not be overhead. Meeting basic bodily functions would not be a cause of embarrassment.

Ensuring a good death for our loved ones is largely about culture change and will take time. Traditionally end-of-life care was not seen as a core activity of hospitals. Deaths were not included in hospital statistics and not included in service plans or adequately reflected in hospital cultures, systems and structures. To this day, basic data on deaths in each hospital is not routinely published.

All too often medical training is focused on cure and treatment. It will take time to ensure that clinicians recognise that failing to cure a person is not a failure but is part of the natural life cycle. Once it is recognised that an illness cannot be cured, a new care plan must be put in place for the patient.

International research in the 1980s, backed up by more recent Irish research in 1999, found a “medicalisation” of the dying process with people unable to communicate or empathise with the dying person. Patients in the last days of their life received less nursing attention and communication.

There are ways forward. Person-centred care means ensuring that the patient’s wishes are known and fulfilled. On October 12, An Taoiseach Enda Kenny is to launch the Think Ahead project – a system to guide people in recording and registering their preferences in the event of emergency, serious illness or death.

To make change happen, we need to learn about the impact of our end-of-life practices. A system of reviewing deaths involving the doctors and families could be a valuable learning experience for medical, nursing and other staff. This has started to happen with 42 hospitals nationwide volunteering to participate in 2008 and 2009 in the HFH’s national audit – the first of its kind in the EU.

Staff need to be supported in their role as caregivers to the dying and the bereaved. Yet HFH research in 2008 on end-of-life care in over 300 acute care and other long-stay facilities highlighted a significant education and training gap in relation to palliative care provision. Most care staff across all facilities had not received any formal qualifications in palliative care.

Intensely personal and profound

Staff have welcomed a range of practical resources for end-of-life care which have been developed by the HFH programme and are being introduced into hospitals. The Family Handover Bag is being used in most Irish hospitals as a dignified way to return the personal possessions of a deceased patient to their family and as an alternative to the practice of returning belongings in a plastic bag.

An end-of-life spiral can be displayed whenever a person has died and is a signal to all staff that an intensely personal and profound event has happened. The spiral is replicated in other materials including an end-of-life door sign and a bed/trolley drape.

These practical resources have already prompted a change in behaviour among staff where they are used. Families also find comfort in the fact that people show respect for their loved one, understand what they as a bereaved family are going through and have anticipated their needs.

Recent evidence shows that where a good range of specialist palliative care services are in place, people are more likely to be able to die in their own homes with support for patients and their relatives provided by strong home care teams and specialist inpatient units. Thus reliance on acute hospitals is reduced – good news for both patients and the health care system.

Some 1,400 children are living with life-limiting conditions and 350 die each year – most in the first year of life. For families with children who are dying, the ability to keep children at home until their death becomes even more important. The hospice home care for children programme, which is being funded by the IHF to the tune of €2.5m, will help support local paediatric teams care for dying children in their own home. When fully implemented, it will have a network of eight outreach nurses in place.

The IHF welcomes and shares the Government’s commitment to the development to primary care services. However, unlike other countries, Ireland has no formal framework to support the delivery of palliative care by primary care teams.

Dying with dignity is a right, not a privilege. The right to a comfortable death should never be dependent on our economic wellbeing.

Sharon Foley is the CEO of the Irish Hospice Foundation. Issues of dying, death and bereavement will be discussed at Forum 2011 at Croke Park on October 12 2011. Members of the public are welcome. The event is being organised by the National Council of the Forum on End of Life in Ireland. For more details see endoflife.ie

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Sharon Foley

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