Report calls for improved end-of-life care

End-of-life care could be improved through better communication with patients and their family and friends, a new report suggests.

The report by Ombudsman Peter Tyndall makes a series of recommendations for improving end-of-life care.

Irish people need to have a considered and thoughtful conversation about death and dying in order to ensure the best possible end of life is achieved for all, the chief executive of the Irish Hospice Foundation, (IHF), Sharon Foley, said, speaking today at the launch of the report.

“It is time we broke the silence about dying. A national palliative care and end-of-life and bereavement strategy needs to be put in place to put the needs of the dying higher up our healthcare agenda,” said Ms Foley.

The report picks up on some of the common themes in complaints made to the Ombudsman about end-of-life care. These include the management of complaints, the return of deceased people’s belongings, issues around post mortems, support for families and friends, and specialised palliative care.

“If there is one message to be learned from complaints brought to us, it is that small things make a big difference. Those moments at the end of a loved one’s life are extremely precious and will be relived again and again,” said Mr Tyndall.

Almost all of the complaints made to the Ombudsman about end-of-life care arise because of poor communication and a lack of clarity about the duties and rights of doctors, nurses, patients and families, according to the report.

Good communication depends on more than empathy between individuals, it says. “Patients and families need to know that they can rely on an institution to deliver the best care possible. Communication systems . . . need to be planned, well structured and effective so that patients and families will have proper and timely access to the supports they expect and require.”

The report says there is often a gap between the message professionals intend to give and what is understood by patients and families. “Sometimes the language used is overly technical or complicated. Sometimes the manner in which information is given distorts its true meaning. Sometimes the message is rushed and basic information is omitted.”

The report points out that families and friends may not be clear about the “unique relationship” of a patient to a doctor and the rights of the patient over those of the family. “This will have implications for the care of a patient and can leave family and friends in the dark as to what is happening to their loved one.”

“It is clear too that patients do not always want to communicate openly with their own families and this can lead to dilemmas if the patient’s condition deteriorates.”

Complaints regularly feature overburdened staff and a lack of physical facilities, the report notes. “Sometimes the defence offered by staff of being very busy and under pressure does not explain or justify the poor and insensitive service. Sometimes management has no choice but to accept the fact that services are unviable unless further investment is provided.”

In relation to physical facilities, patients and families want peace and privacy at the end of life, the report points out, and for most people this means access to a private room.

Patients and families are often confused about the meaning of “do not resuscitate” notices, according to the Ombudsman, who says complaints highlight the need for a more rigorous or formal procedure for making, recording and communicating DNR decisions. “Patients and their families or next of kin need to understand what such a decision entails and who holds responsibility.”

While the provision of palliative care is a question of clinical judgment, the Ombudsman says it is clear that patients want to be as comfortable and pain-free as possible. After discharge, the hospital has a responsibility to ensure that a patient is brought to the attention of the local services and had their pain needs met at home.

Every year, about 29,000 people die and up to 290,000 people are left bereaved. While most people want to die at home, only one-quarter actually do so, while 43 per cent die in an acute hospital.

The launch included a preview screening of an RTÉ/IHF documentary, Way to Go - Death and the Irish, by Norah Casey, to be broadcast next Tuesday. The businesswoman, whose husband Richard died in 2011, talks to people candidly about going through the last months of their lives.