The complaints set out in this review provide a glimpse into end of life experiences in acute hospitals and show the range of difficulties that can arise. The experience of the Ombudsman is that many problems arise because of poor communication and oversights often caused by resource deficits.
Communication
Almost every case in this review, and most of those that come to the Ombudsman, arise because of poor communication at some level and lack of clarity about the respective duties and rights of doctors, nurses, patients and families or friends.
Health professionals work in a busy and stressful environment. They work with people who have usually not chosen to be in that environment and who may be very ill or distressed. Health professionals and other staff working with dying people must make every effort to provide the space and time to communicate clearly and empathetically with patients and their families. To the patient and his or her family, that skill is integral to the high quality medical and nursing care expected from the hospital.
Good communication depends on more than empathetic communication between individuals. Patients and families need to know that they can rely on an institution to deliver the best care possible. Communication systems within hospital departments, between doctors, between nurses, with the family, with related settings and with services outside the hospital (including General Practitioners and Public Health Nurses), 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.
Families and friends may not be clear about the unique relationship of a patient to a doctor and the rights of the patient over that 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. Doctors and staff may on occasion be unclear themselves as to how much information they in turn should communicate to family and friends in these circumstances. 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.
The language and way in which information is communicated is crucial. Information needs to be shared using simple clear language, in a manner that treats the patient and family or friends as equals, facilitating the emergence of the ‘expert patient’ as envisaged by the Health Service Executive. When patients and relatives express their fears about a diagnosis, a prognosis, or pain control, they need to know that staff will listen to them, take them seriously and respond with the reassurance or action that is needed. Time is often required for good communication, and there is rarely an over-supply of it, but professionals need to be clear on the importance of these conversations at the end of life or after a death. Hospital staff also need to be vigilant in documenting any important actions or discussions.
Resources
Regularly an overburdened staff and lack of physical facilities feature in complaints. 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.
With regard to physical facilities, patients and families want peace and privacy at the end of life. For most people this means access to a private room. Relatives need a private space to spend time with a loved one after death, a space clear of normal hospital routine, where they can grieve without worrying about the needs of other patients, or without being observed by others.
Relatives need to see their loved one cared for in a dignified way after death. For relatives this means that the remains will be dressed or covered appropriately and can be viewed in a clean and calm place.
Pain Management
The question of when, or if, palliative care should be suggested to a patient is a matter of clinical judgment outside the competence of the Ombudsman and is clearly something for clinicians and others to debate. What is clear to the Ombudsman however is that patients want to be as comfortable and pain free as possible and that acute hospitals are expected to rise to the challenge of meeting that expectation, within ethical and medical constraints, and while respecting the wishes of individuals. The hospital has a responsibility to ensure that a patient who has been discharged has been brought to the attention of local services in a timely manner and will have their pain control needs met at home.
The Way Forward
The Forum on End of Life in Ireland has encouraged communities to have a more open attitude to dying and death, and to the broad range of issues that death raises. Using tools such as the citizen-led Think Ahead form, we are encouraged to plan and to have our wishes and preferences recorded and respected. HIQA standards also make provision for such advance care planning and consultation.
It is a matter for individuals to decide whether or not they want to plan ahead to spell out their preferences in the event of a significant health emergency or in the face of a serious prognosis. Certainly such clarity may make life easier for health professionals and may lead to more comfortable experiences for patients and families.
Regardless of individual advance care planning, the onus remains on all those responsible for providing health care to ensure that the service at end of life is completely focussed on the dying person’s needs and thereafter their loved ones. Service providers need to continuously improve and learn from mistakes that have occurred.
The Ombudsman will continue to contribute to that process by examining complaints in an independent and impartial manner and by providing feedback to complainants and service providers. The Ombudsman commends the Irish Hospice Foundation, the Hospice Friendly Hospitals Programme, and all other public and volutary organisations who strive to provide excellent care for people at the end of their lives.