Specialist Palliative Care Team not contacted over a weekend period for advice
Keeping in touch with the Specialist Palliative Care Team
“My mum was in agony on the Friday until the Tuesday. She never, to the best of my knowledge, received any palliative care over that weekend. That angers me greatly.”
Mrs Brady was receiving treatment for cancer in hospital. Her son complained about her treatment over a particular weekend shortly before her death. He said that the hospital had failed to manage her symptoms adequately. He believed that his mother had been in great distress and pain over the weekend. He complained that the hospital had not called in the on-call Specialist Palliative Care Service at this time to provide the appropriate care and relieve her pain.
The hospital explained that his mother was constantly monitored by nursing staff and was reviewed by medical staff during the time in question. The woman was receiving a combination of pain relieving medication as advised for her by the Specialist Palliative Care Team. Additional medication was also administered to deal with the agitation and confusion she suffered as a consequence of her illness. The hospital said that when she did complain specifically of pain, additional pain relief was provided.
As the decision to maintain a certain medication regime was a clinical one, the Ombudsman could not investigate this or come to any conclusion about whether or not this was appropriate. However, the hospital conceded that, in hindsight, it would have been advisable to have contacted the Specialist Palliative Care Team over the weekend. This would have had the benefit of assuring the hospital staff and the family that the appropriate care was being provided and that all alternative measures to alleviate her distress had been considered.
The hospital said that it had learned from this experience and that staff will bring the learning to bear on their decision making in similar cases in the future and contact the on-call Palliative Care Team for guidance, at weekends.
“Pain relief depends on the knowledge, skills and attitudes of staff. Remember – the pain is the patient’s pain”
Prof. Patrick Plunkett to Oireachtas Committee on Health and Children.
“The Staff in the coronary care unit were so kind to us and our father and made sure his final journey was a peaceful and dignified one.”
“Words cannot express how grateful we are to her for the care she gave to our father.”
[A remark about a care attendant]
“I nursed my mother at home for 14 days with the support of the palliative care team. Throughout those two weeks the fear and worry my mother expressed was due to pain.”
“All I wanted was for people to listen so my mother would get the quality of care that she rightly deserved.”
Preparing for a hospital discharge and problems accessing morphine for a patient at home
Home support
Mrs Whelan was an 85 year old woman who had a number of serious conditions including cardiac problems and cancer. She was discharged to her home from an acute hospital and was cared for by her daughters until she died six days later.
Her daughter complained that although her mother was seriously ill, the Public Health Nurse did not come to visit her following her discharge from hospital until the day before she died. The family also complained that the hospital had failed to ensure that medication for pain relief was provided.
The hospital admitted that although a referral to the Public Health Nurse was recorded, she had not in fact been contacted by the hospital and was unaware of the patient’s needs. The actual referral was not made until a date following the patient’s death. The visit that took place only happened because of local contacts made with the nurse. The hospital apologised to the family for the delay and associated distress that this caused.
When their mother was discharged for the last time before her death, the family received a prescription that afternoon which included morphine. The family received no advice on how to administer it and had to ask the pharmacist about it. They had been promised by a member of the medical staff that they would receive a two day supply of medication to tide them over, but this was subsequently refused by the staff on the ward who told them it wasn’t hospital policy. In the event, the pharmacy did not have morphine in stock and the patient and family had to wait until the next day for it. That night the family had to call out a doctor to administer an injection to their mother for severe pain. The family felt that the hospital could have issued the prescription earlier in the day to allow them to source the medication in a timely way, or, that it should have made contact with the pharmacy in advance to ensure that it had a stock of morphine available.
The hospital had told the family when they made their complaint that it was not policy to contact pharmacies to ensure that morphine was in stock and said that the pharmacy should have been able to source the morphine from another source.
What can we learn?
The quality rather than the length of life is more important to most people with a life-limiting condition. Research by the Irish Hospice Foundation confirms this. The patient’s priority is that pain will be managed and that he or she will be pain free.
Unfortunately it may not be possible to meet that expectation in every circumstance. Cases put to the Ombudsman show that a peaceful, comfortable death helps both patient and relatives. In contrast, the experience of real or apparent discomfort suffered by a patient can haunt the relatives and prolong the grieving process for them.
It is crucial for patients and families to know that they will receive palliative care if they choose it and that pain will be controlled to the greatest extent possible. Families talking to the Ombudsman cannot understand how a patient in a hospital might not have immediate access to effective relief. The question of what might constitute appropriate pain relief is very much a clinical one and the Ombudsman is unable to comment on this, other than to say that the patient’s voice should be heard.
The patient should always be at the centre of care. No one should be discharged from a hospital without arrangements being in place to ensure that their immediate and longer term care needs, including pain control, will be met. While every patient’s discharge must be planned extremely well, this is critically important in the case of a person who is terminally ill. Again, these are vital moments for the patient and their family. The family, often without formal qualifications in the delivery of care, really want to do their best for their loved one and give that person a comfortable and dignified death. A rushed or unplanned discharge is unacceptable in those circumstances.
Patients and carers at home face a range of challenges usually of a type never faced by them before. They are dependent on their GP, Public Health Nurse and the palliative care team where available to support and guide them through this experience. Careful pre-planning and formal cooperation between health care professionals is required if there is to be ‘joined up thinking’ and appropriate support for the patient and carers.
We need to avoid the situation where an already stressed carer is made to believe that it is his or her fault that their loved one is in pain. We need to avoid situations where a traumatised family is forced to call out a doctor in the middle of the night to administer pain relief that should have been available all along.