Family not contacted to say mother was dying
Timely warning
Mrs Cummins, who was 79 years old, was a patient in an acute hospital. She rang her son from the hospital one morning and told him that she was dying. Later that evening Mrs Cummins passed away.
Her son said that when his mother rang, he immediately went to the hospital to see her. He complained that he was not told by the hospital for a further four hours after his arrival of the seriousness of her condition. Mr Cummins said that as a result of the hospital’s failure to speak to him directly, other members of his family who lived a distance away did not have time to travel home to be with their mother when she died.
The hospital admitted that there had been a failure to contact the next of kin in a situation where there was clear consent to do so and clear evidence of a deteriorating condition. As a result of the experience in this case, the hospital put in place a written policy on contacting next of kin, to make sure that this would not happen again.
Sister told to “stop hyperventilating – she was not helping anyone”
Breaking News of a Death
Mr O’Rourke, a young man, was seriously ill in the Intensive Care Unit of a hospital, following a head injury. Ten days later he was transferred to a different hospital where he died.Ms O’Rourke was recorded as the next of kin on her brother’s records and she expected that any serious communication would be made directly to her. On the day of her brother’s death, her parents were visiting the hospital when their son died. Unaware that her brother had just died, Ms O’Rourke arrived in the ICU and overheard two nurses speaking of her brother’s death. She began to hyperventilate with shock and says she was told by a nurse very abruptly to ‘stay calm as you are not helping anyone”. She was very upset to find out about her brother’s death in this casual way and also complained that the nurses were not supportive of her when she became upset.
The hospital in question is participating in the Hospice Friendly Hospitals Programme. The hospital apologised for what happened on this occasion and said that it hoped that participation in the HFHP would encourage a better understanding by the staff of how to communicate sensitively with families around the time of death.
Lack of privacy when patient died
Privacy
Mr Devitt was 61 years old when he was admitted to hospital following a stroke. He was transferred to a high dependency ward and died several days later.
Mr Devitt’s daughter made a number of complaints about her late father’s care at the end of life. The family was especially upset because there was no single room available and hence their father died on a busy ward. When he died, the only privacy available to the family was the curtain around his bed. The family was grieving for their father while
normal activities such as meals and television continued around them. At one point, a member of support staff had pulled the curtain back to ask their father if he needed dinner.
The family also complained that they were asked to leave at a certain time even though the remains were left on the ward for several hours before being moved to the mortuary. They were upset by what they saw as a lack of respect for their father.
“I attended the bedside of a friend who was dying in a Dublin hospital. She lived her last hours in a public ward with a television blaring out a football match, all but drowning our final conversation. I have since come to believe that in hospital, aesthetics are as important as function, and that an aesthetic environment automatically leads to good practice and better care.”
Actor Gabriel Byrne
Treatment of the remains after death
Dignity after death
“This was my father; he was a unique human being. After helping to save three other lives, it seems to us he was simply put to one side and given no more thought.”
Mr Byrne was admitted to hospital following a fall. He had suffered irreversible brain injury and the medical team discussed organ donation with the family. As their father had been an enthusiastic supporter of organ donation, the family agreed to this. Mr Byrne was pronounced dead in accordance with the appropriate procedures.
While the care provided up to this point was unquestioned, from the time that the family agreed to the organ harvesting procedure, things went wrong. The hospital failed to contact the Coroner in a timely way to enable an identification to take place when Mr Byrne was pronounced dead. The family understood that the hospital would get in touch with them as soon as the organ harvesting procedure was over, but this did not happen.
When the family themselves contacted the hospital a day later they were eventually told that the procedure was completed and that they would now need to undertake a Garda ID of the remains. They made their way to the hospital to do this. The family describe a lengthy walk in and out of corridors, out through an open space strewn with rubbish and debris, until they eventually were brought by a back door into what they believed was the mortuary.
They described finding their father’s body on a slab ‘with nothing more than a sheet thrown over him’. They spoke of the ongoing trauma of reliving this scene. Although the hospital said that the remains were gowned, the family stated that his shoulders were bare and they believed their father to be naked. The hospital in this case acknowledged that mistakes were made and apologised to the family for the distress caused. The hospital also recommended that the End of Life Committee in the hospital produce an action plan to avoid a recurrence of the problems that arose.
Poor communication with bereaved family
Sudden death
Mr Donohoe had a number of diagnostic procedures as an inpatient. Eventually a diagnosis of pancreatic cancer was made. Mr Donohoe remained in hospital while palliative care options were being discussed. His condition deteriorated suddenly one night and he died an hour later.
Mr Donohoe’s daughter had several complaints about her late father’s end of life care, including the way in which news of his terminal condition was eventually communicated to him, his hygiene and grooming care, and the management of his pain. She said that the most distressing issue for the family was the failure to alert them when Mr Donohoe became seriously ill. By the time the hospital contacted the family, Mr Donohoe had already died.
Mr Donohoe’s daughter said that when her family arrived at the hospital they were brought to view their father’s remains in a public ward. This was during the night. The family became upset and were asked to leave as they were disturbing other patients. They said that no one sympathised with them or offered to explain what had happened to their father.
Family had to ask for Last Rites
Respect for religious beliefs
Mr Brennan was being treated for cancer. He had been ill for some time and his condition was terminal, but when his death occurred it was unexpected.
Mrs Brennan made a number of complaints about her husband’s end of life care. One of the issues raised was that there was a delay in arranging to have the priest called to administer the Last Rites. She herself had to request that this be done. The priest was eventually called, but it was an hour before he could attend and the family was very upset by the delay.
The hospital agreed that the complaint highlighted weaknesses within the hospital in relation to the quality of standards around end of life care. The hospital accepted that, although staffs were aware of the protocol, there was delay in contacting the priest as they were busy at the time attending to the needs of other sick patients.
The hospital apologised to the family for the distress caused and told the Ombudsman that it was working in conjunction with the Hospice Friendly Hospitals Programme to make good end of life care central to the work of the hospital. Since dealing with this complaint, the hospital has provided leaflets to bereaved families, providing useful information and contact details.
Educating the Carer
Ensuring that the Carer knows what to expect
“I didn’t know what questions to ask – I only found out what I needed to ask as I went through the experience of caring for my mother.”
Mrs Brown had pancreatic cancer. Following reviews by the Specialist Palliative Care Team Mrs Brown was discharged home into her daughter’s care. Mrs Brown was reluctant to consider the involvement of the Hospice at that point and it was her wish to die at home when the time came.
On the day of her death, Mrs Brown became unwell and experienced some breathing difficulties. Her daughter was unsure whether her mother needed to be readmitted to hospital and she sought assistance from her GP. However, the GP only managed to call out to her home later that evening which meant that Mrs Brown was without medical assistance throughout the afternoon.
The GP diagnosed septicaemia but advised against moving Mrs Brown to hospital. The emergency services attended Mrs Brown and provided oxygen to relieve her breathing distress. However, the emergency services could not provide the drip treatment which she would have needed to help treat her condition. The hospice nurse attended shortly afterwards and Mrs Brown later died as she had wished, in her own home.
After her death, Mrs Brown’s daughter made the point that carers should be properly briefed so that they are as well equipped as possible to meet the needs of the dying patient. Her daughter said that it would have been beneficial for her had a formal “hand over meeting” taken place, attended by both the oncology team and the palliative care team, so that all relevant information could have been provided to her.
She said that this should be standard practice in hospitals. “It takes many years for doctors and nurses to qualify - it is only fair therefore that the carer(s) would be offered this opportunity before they are required to manage the final stage of terminal illness and the death of the person they love”.
She told the Ombudsman that she simply did not know what questions to ask at the time and only realised what she needed to know as she went through the experience of caring for her dying mother. She considered that had some printed information and advice been available to her with regard to what she could expect, this would have been most useful. While such information is available to staff, there is no literature currently available to carers or relatives who are looking after terminally ill patients at home.
What can we learn?
Families have certain needs when dealing with the end of life care and death of their loved one. Every death is unique and for families, every death, even when it is expected, is deeply emotional. In some cases it may be the family’s first experience of death and they may be completely unsure of what to expect and what must be done. It is natural that they will look first and foremost to the setting where the person has died for advice and guidance. They will expect clear information and good, effective support from that organisation.
Good communication is at the core of these needs. For example, families need practical and comprehensive information on what to expect and how to cope when a patient is discharged home. Families will depend on the hospital to have alerted community services to their urgent need in the home. They will expect the experts to forewarn them of likely difficulties and to offer advice and assistance on how these will be managed.
Families need support and compassion, regardless of whether death is expected or occurs suddenly. Families will differ in their response to the death of a loved one. Some family members will need to leave the scene and seek space on their own for a time; others will want to spend time with the remains. In many unfortunate instances, death occurs suddenly before a family can reach the bedside of the dying person and the immediate reality of the death strikes home only when they see the remains. This has to be expected and the proper facilities should be available.
Whatever the circumstances of a death, it is the experience of the Ombudsman that where and how the family spend their final moments with their loved one, before and after death, is very significant. A traumatic experience can have significant consequences for the grieving process. The opportunity for next of kin to view, or spend time with, their loved one after death is precious. In ideal circumstances this will take place in a dedicated private space, sensitively decorated and appropriately lit and the family will have as much time as they need. The family will have been told in advance what to expect in terms of the condition of the dying person or the remains to minimise any shock.
All hospitals should have clear internal communications procedures for communicating with patients and families. The hospital system, as distinct from individual departments or sections, should ensure that all foreseeable instances are planned for and staff know what they should do. When a death has occurred, staff should sensitively extend their condolences to all relevant family members and friends.