Daughter not told of father’s deteriorating condition, at his request
A Patient’s wishes
Mr Mooney, an older man, was receiving treatment for a range of chronic conditions in an acute hospital. His condition became more serious overnight and the staff on duty wished to contact the family. However, when the staff suggested this to him he said that his daughter should not be contacted as she was not well herself and he did not want to worry her. As Mr Mooney’s condition had improved somewhat and the staff knew that his daughter was due to visit, they decided to respect his wishes.
Unfortunately, no member of staff spoke with Ms Mooney before she reached her father’s bedside and his worsened condition was a great shock to her. Ms Mooney believed that she should have been informed of the deterioration before meeting him.
The Ombudsman found that the hospital had respected the patient’s wishes and had documented them clearly. But the case highlighted the need for good communication and for staff to be vigilant and empathetic to family members’ anxieties and concerns. While staff may have been too busy to notice the daughter arriving into the ward, a few kind words with her at some point during her visit could have resolved the matter locally and prevented weeks and months of distress as the complaint escalated eventually to the Ombudsman.
Patient told of terminal illness without offering to have family member or support staff present
A Family’s wishes versus the Patient’s wishes
Mrs Wilson was 87 years of age and a patient in an acute hospital. Her doctor told her that her illness was terminal. Mrs Wilson’s daughter was extremely upset about this and said that she had made it clear in advance that her mother was not to be told about her condition.
The daughter claimed that the hospital had breached its own guidelines on breaking bad news by not having a family member or staff member present when the news was given to her mother. Ms Wilson said that the experience had distressed her mother deeply and made her last weeks miserable.
Ms Wilson had initially found out about her mother’s condition when talking to a hospital Registrar. She said that she told the Registrar at that point that her mother was not to be told how ill she was. She could not identify the person with whom she had spoken and there was no record in the patient’s notes documenting the discussion.
When questioned by the Ombudsman’s office, the Consultant said that his patient had full capacity. He was unaware that Ms Wilson had strong views about the news to be given to her mother as this was not documented. He had exercised his clinical judgement in discussing her condition with his patient first, while offering to have a family meeting following that. There was no record to indicate if the patient had been asked if she wished to have someone present with her when news of her condition was broken to her.
The hospital’s guidelines on breaking bad news outlined a number of rights including the following:
- Patients have a right to receive or not receive bad news;
- Patients have a right to decide how much information they feel they need;
- Patients have a right to decide who should be present during the consultation (i.e. family members including children and /or significant others).
The guidelines also recommend that other members of the multi-disciplinary team, such as a nurse, social worker or a pastoral care team member, should be present when the news is being communicated and during ongoing consultations.
Situations like this are not “win win” for anyone. Respecting the patient’s rights must be, first and foremost, the clinician’s concern. However, it is important that clinicians break such news extremely sensitively and that they be informed of any requests or dynamics that might inform their decision. Health care teams must communicate very well with each other and document all key developments in the medical chart. Good guidance to staff on such sensitive issues as breaking bad news is critical, and should be followed by all staff.
Results of scan not disclosed
Respecting the patient’s wishes
Mrs McLoughlin was receiving outpatient treatment for cancer for more than a year at an acute hospital. Her condition worsened suddenly and she was admitted to hospital to manage her pain. She returned to her home and died several weeks later.
Mrs McLoughlin’s son complained that his mother’s scan results were not discussed with the family in a timely way. Because of this, there was a delay in referring his mother for specialist palliative care and her pain was not adequately controlled for a period of 2 months. Mr McLoughlin said that his mother and the family were deeply and unnecessarily distressed by this.
When the medical and nursing files were examined, it emerged that Mrs McLoughlin held a very strong view that her medical condition was private to her. It was documented that she did not wish to have this discussed with her family without her knowledge. Furthermore, she had told her Consultant that she did not want to have a discussion about her scan results until a family event, due to take place shortly, was over. As that event was postponed, so too was the discussion of the scan results, but this was as Mrs McLoughlin had chosen.
The Consultant believed that if he were to refer his patient to specialist palliative care in advance of discussing the results, this would mean in effect that he was letting her know the results. He believed that to do this would have been in breach of his ethical obligation to abide by his patient’s wishes not to be told of the results until the date of her choosing. The downside of this was that the specialist palliative care team was not involved in her care and her pain control was not as it should have been.
When Mrs McLoughlin’s condition worsened before the agreed date for discussion of the scan, she was admitted to hospital for pain control and agreed to accept home care management. She was nursed at home by her family with the support of the team. However, the family contended that her final weeks were haunted by fear of pain and believed that this experience could have been avoided.
What can we learn?
Patient autonomy means that the patient is at the centre of decisions about his or her care. This includes communication of information about his or her condition as appropriate. The purpose is to respect patients’ wishes. Where their wishes are not known, the health care team must endeavour to communicate effectively with next of kin to ensure that the correct decision is made in the patient’s best interest. Sometimes the rights of patients and the wishes of families are in conflict and it can be a struggle to balance these. However, to avoid long term distress, it is best to try and settle these conflicts as early as possible through open and sensitive communication.
“Every patient has the right to be fully informed about their health status, including the medical facts about their condition …. Information should be withheld from patients only exceptionally, when there is good reason to believe that this information would, without any expectation of obvious positive effects, cause them serious harm.”
(Ombudsman’s Statement of Good Practice for the Public Health Service in Dealing with Patients)
Patients with capacity will be informed directly of their condition by a doctor unless there is good reason not to do this. Patients who wish to follow a different path need to have their wishes documented.
Families are sometimes unaware of where or how they can fit into the care of a loved one. They sometimes believe, mistakenly, that they have a right to full information about their loved one as well as the right to make decisions on behalf of the person who is ill. Staff should ensure that a patient’s wishes regarding disclosure of a condition are documented. Staff also need to be clear about the rights of families and friends to information, particularly where the condition of the patient may be deteriorating. Where conflict arises, open dialogue and early resolution is the better outcome for all concerned.