Don’t be afraid to ask
Aside from this Covid 19 era half of us will die in hospital. Many deaths can be anticipated hours or even days ahead. Government guidelines have been in place for the last 6 years to improve the experience of dying for the patient and their family. A recent government study shows that, for the majority, hospitals deal well with the dying. But one area for improvement appears to be communication between medical staff and the patient and their families. While medical staff can be reluctant to be pessimistic, most patients and their families would prefer to be told if the end is very near. Don’t be afraid to ask.
(See some details of the study below.)
Survey of quality of death in hospital published July 2020
Almost half of deaths in England and Wales take place in hospital.
For expected deaths, “One Chance to Get It Right” published in 2014, gives national recommendations. These aim to ensure consistent, high quality care for people in the last days and hours of life.
The recommendations cover:
- care of and communication with the dying and their relatives
- provision of palliative care
- proper funding of end of life care in whatever setting
- individual needs and wishes
- provision of medication for those being transferred from hospital to home or care home.
All of these should be documented in the patient’s notes.
The ‘National Audit of Care at the End of Life’ reports on how well these recommendations are being followed. This second report (completed before the start of the coronavirus 19 epidemic) was carried out in 2019 and published in July 2020.
All NHS adult acute and community hospitals in England and Wales were involved. The case notes of those who died during April and May 2019, “expectedly” or “not surprisingly”, were examined. Hospice deaths were not covered. There were 6,730 case note reviews.
The main points of interest were:
- Was the possibility of imminent death recognised?
- Was there a plan of care for each patient?
Recognition of imminent death
‘One Chance to Get It Right’ encourages recognition and clear communication of the possibility that a person may die within the next few days or hours. Since it is not always clear, “staff should have an awareness of recognising and communicating uncertainty early in the hospital admission”.
Ward staff had recognised that death was near in 88% of cases.
In 89% it was documented that there had either been a conversation with the patient about the possibility of death (27%) or a reason given why such a conversation had not happened (62%). In 2% the patient had not wished to be told they were dying.
A third of patients died within 24 hours of imminent death being recognised and most of the others within one week.
Data collectors were concerned about some instances of late recognition of dying.
These should be written in the patient’s hospital notes. They are meant to take into account the needs and wishes of the person who is dying. End of life care needs such as food and drink, symptom control, psychological, social and spiritual support. should be covered. (‘One Chance to Get It Right’)
One third of those recognised as being close to death did not have a care plan even though almost half did not die for 24 hrs or more.
Physical needs were generally well assessed, apart from nausea and vomiting. Less generally well assessed were social, emotional/psychological and spiritual/religious/cultural needs.
In two thirds of cases there was no documented discussion about drowsiness as a result of medication.
In half there was no documented discussion about food and drink.
the dying person, and those identified as important to them, should be involved in decisions about treatment and care to the extent that the dying person wants. (‘One Chance to Get It Right’)
In patients with care plans a quarter (24%) had been involved in discussing the plan of care. In just over 2/3 (69%) a reason was given why this wasn’t possible.
Out of all comments from families about communication, one third (32%) were about communication with the patient
Comments from families:
“We knew my father would not want to be told he was dying but she was insistent that he should know.”
“I was very impressed how the staff spoke to him and cared for him with such empathy and dignity.”
Specialist palliative medical and nursing cover should be available 9am-5pm, 7 days a week and a 24-hour telephone advice service This would usually be provided by nurse specialists face-to-face, supported by medical telephone advice. (‘One Chance to Get It Right’).
Whilst almost all hospitals had access to specialist palliative care, only one third had a face to face service provision seven days a week.
The needs of families and others identified as important to the dying person should be asked about, respected and met as far as possible (‘One Chance to Get It Right’).
Relatives, carers and those close to the person who died were invited to complete a ‘Quality Survey’. This was designed to gain feedback on their experiences of the care and support received at the end of life; 1,581 surveys were completed.
Is hospital the right place to die?
A definite majority (80%) thought that hospital was the ‘right’ place for their relative to die; three quarters (73%) thought that the location within the hospital was right and two thirds (69%) that the environment was suitable.
The comments below help to describe the concerns of those who felt let down.
“I feel people who are nearing the end of life deserve to have peace and quiet and dignity, not in a bed with curtains drawn around it and people shouting.”
“I feel a private room would have made a huge difference not only to my mum but emotionally to her family.”
“She was moved from one ward to another without us being told.”
Communication and the recognition of death.
There were 1,118 comments, positive and negative from people important to the dying person. These were often about communication and the recognition of death (late in 6%).
“We were notified early of this decline (6 hours prior to death) so were able to be with him and at that time the staff were excellent in explaining the situation and looking after our need.”
“----family should have been better informed about her imminent passing. The consultants didn’t emphasise how soon it would be.”
“Communication with the doctors was almost non-existent.”
"I didn’t feel I was kept in the picture enough -the communication was not direct enough -I like things in black and white.
Were families supported and were their needs met?
Over half of families and others reported that the staff had asked about their needs.
Almost two-thirds thought that they had enough emotional and practical support. One quarter rated the support of families as ‘poor’ or ‘fair’.
Over half were satisfied with the information given, had been asked about their needs and had felt supported; 20% disagreed.
With spiritual/cultural/religious support – 30% were satisfied, 12% were not satisfied and the largest group (36%) thought this question not applicable or they were not sure.
“As a family we felt well supported. The nurses were excellent and went out of their way to make sure we were as comfortable as we could be while staying overnight with Mum.”
“The end of life care for us as a family was enhanced by us having access to the XX Suite which was very helpful.”
“After he died, we were told exactly what would happen and given time to sort ourselves out, no-one rushed us and we weren’t made to feel we had to go.”
“After the person had died, we (the relatives) were put in a room, best described as a cupboard, with no information whilst waiting for transport home. We found the care and support severely lacking in all respects.”
“All members of staff from the specialist down to the cleaners treated me and my family with respect and kindness and were very helpful when I needed them, I cannot thank them enough for all their help.”