Misunderstanding about husband’s cancer
Communicating Diagnosis
Mr Clarke was a 64 year old man who was receiving treatment in hospital for lung cancer. After his death, Mrs Clarke complained about her late husband’s care in hospital, including the way in which news of his condition was given to her. Mrs Clarke said that following chemotherapy, she was told, that her husband’s cancer was ‘gone’.
The Consultant stated that while he would have said that he was pleased with the patient’s response to chemotherapy, it would never have been his practice to say that a specific cancer was gone or resolved in the way that Mrs Clarke understood.
A case like this shows how easy it is in conversation for two people to have a very different understanding of a message. It shows how important it is for medical and nursing staff to check with patients and families that they have a clear understanding of the information being conveyed.
Critical information withheld from patient and family
Giving a Prognosis
Mrs Sullivan was being treated for lung cancer in hospital and underwent a number of diagnostic procedures and treatments. When she died, her family complained that they were not told about their mother’s prognosis until she was unconscious.
Mrs Sullivan’s daughter said that because she did not understand how ill her mother was, she had concentrated on encouraging her to eat and become stronger. In retrospect she and her sisters wished they had known that their mother’s condition was terminal. If they had known just how ill she was, they believe that the family could have lived the final weeks with their mother in a different way and come to terms with her death more easily.
“As a family we should have been given the truth that would have allowed us in the last few weeks of her life to support and assist her in coming to terms with her prognosis. Instead we were trying to get her to eat, make her stronger and giving her hope.”
The Consultant in this case said that it was his practice to provide information about a patient’s prognosis when it was requested and not as a matter of course. As far as he could remember, the patient in this case never looked for information about the probable course of her illness in spite of opportunities that might have prompted this.
“We need to help staff overcome their own fears about dying and end of life, overcome the ‘tyranny of the positive’ and inappropriate reassurance in place of real conversation.”
( Bryan Nolan, Communication Coordinator, IHF, to the Oireachtas Hearings)
Staff in hospitals must first and foremost respect the rights of their patients to choose how to share their diagnosis and prognosis with others. They must also be alert to how this has been done and be sensitive to the needs of both patients and their loved ones. Where appropriate, staff should offer support and reassurance.
Lack of understanding of DNR (Do Not Resuscitate) decisions
Explaining a DNR
What is meant by a ‘Do Not Resuscitate’ order or notice? The Ombudsman has received many complaints in this area and it is clear that patients and families are often confused about what it means. People are also unsure about who has the right to decide on this course of action / inaction for the patient.
Mrs Doyle was an older woman living in a nursing home when she became ill and was transferred to hospital. Her condition deteriorated and she died several days later. When she died her son complained about the treatment provided to his mother in her final days and he looked for her medical records.
He was clear that he and his family had agreed to a ‘Do Not Resuscitate’ notice on his mother’s file. However, he insisted that phrases on her medical file such as ‘for comfort measures only’ and ‘for peaceful measures only’ were never explained to him.
He believed in hindsight that by agreeing to the DNR he had also agreed to the withdrawal of medication. This upset him greatly as he felt that this had hastened his mother’s death. He was of the view that he had the right to request that certain treatments be made available to his mother. He was not aware of any duty on the part of the doctor to make clinical decisions in the patient’s best interest.
The Ombudsman found that the experience highlighted the need for a more rigorous or formal procedure for making, recording and communicating about a DNR decision. Patients and their families or next of kin, need to understand what such a decision entails and who holds responsibility. There is a need to ensure that families or next of kin are consulted in a clear and unambiguous way about the treatment that is likely to be provided or ceased, where the decision has been made to adopt a DNR status. Next of kin should be able to talk to a doctor and be given information which explains the implications of the decision for care and treatment. Nationally agreed policy should inform each hospital’s policy and clarify the duty of the medical team in the decision making process.
What can we learn?
Poor communication is a feature of almost every complaint sent to the Ombudsman. There is often a gap between the message professionals intended to give and what the relatives and friends understood. 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. More often it is the case that the information is so overwhelming that it needs repeating and summarising, and it requires time at the end for discussion to ensure it has been properly understood.
Patients and families often do not understand terminology that is routine to staff. Sometimes a professional’s effort to be kind and sensitive results in vagueness and confusion. Families sometimes have the experience of clinicians communicating with them in ways that seem defensive, arrogant, uncaring or aloof.
Cultural diversity and language differences may also give rise to difficulties for staff, patients and relatives. While respecting cultural difference, the patient and the loved ones remain at the heart of care. Every effort must be made to ensure that information is communicated in a clear and respectful manner to them. Medical staff need to carefully document discussions they have with patients and relatives about diagnosis and prognosis.
There can sometimes be confusion about the rights of next of kin. This happens particularly in relation to “Do Not Resuscitate” orders or “Comfort Only” measures orders either placed on a patient’s record, or conveyed by a consultant to a team, without communicating this to the family. The bedside of a dying loved one is no place to engage in conflict about these matters.