Case Study

Over the last two years, the Trust has been working hard to improve services for end of life patients and the families of deceased patients after death. The Trust adopted the orange gerbera (daisy) symbol to identify where services were designed specifically for this patient group or their families. We have branded this “Dignity in Dying”.

Under the “Dignity in Dying” project, a number of individual small projects and initiatives have been undertaken which have all contributed to overall improved care and experience for patients and their families. All of the projects and initiatives have the orange daisy logo making them easily identifiable. Some of these changes are:
 Dignity bags for patient property
 Condolence cards
 End of life magnets and door signs
 End of life leaflets
 Mortuary trolley covers

A significant change has been the development of the Daisy Bereavement Centre for relatives to attend to complete the difficult but necessary processes following a patient death.

Feedback from relatives is received by a bereavement questionnaire sent out to relatives 3 months after they have had a bereavement. In addition, feedback was also received as part of informal PALS cases and formal complaints. Overwhelmingly, relatives were telling us that whilst much had been done to improve end of life care for patients, once they died there was limited support available for the families. There were also issues identified regarding completing the necessary administrative processes after death – the teams that needed to be accessed as part of the process were situated in 3 different areas in the hospital which meant collecting the death certificate and registering the death became more prolonged than necessary.

Although pastoral support could be offered to families, this had to be requested from a team in a further separate area of the hospital making the service fractured and difficult to access. Some of the teams were in areas which could not be accessed by the public which meant they had to report to the information desk and be escorted through security doors. However, the areas were staff areas so families that were very upset would be sitting in an area where staff were walking through constantly – no privacy or dignity.

The whole process felt very impersonal and one comment from a service user stood out: “It is like going to the post office to collect a parcel”. This was not the experience we wanted our families to have at what was already a sad and distressing time for them. Rev. Wright had a vision to create a single bereavement centre which could incorporate all of the elements that bereaved families required. The vision was to develop an accessible, calm, compassionate environment which could meet the needs of relatives.

The chaplaincy team already had an office that they were using as a base, but the area was shared with other teams. Rev Wright put together a task and finish group to look at how the space could be redesigned to incorporate the required teams. He also explored options for relocating the teams that were already using the space. He ensured there was a multi-disciplinary approach and invited colleagues from bereavement team, end of life team, and chaplaincy team.

In addition he undertook consultation with nursing and medical colleagues and partner organisations – primary the local authority who provide the registry function. Support was also provided by the Estates and Facilities Team, Communication and IT and from our external facilities contractor.

Once the space had been redesigned, Rev Wright produced an implementation plan to co-ordinate the moves with minimal service disruption. Moving the local authority registry office was complicated by IT hardware issues but the working group was able to work together to identify a solution and address the financial impact of this.

The new Daisy Bereavement Centre has been well received by relatives, staff and external providers. The centre opens into a welcoming waiting area which has comfortable seating, hot drinks available, soft music and an information area. From the main waiting area, there is a bereavement team office which is home to the bereavement team.

This team undertake all of the administration required – ensuring death certificates are appropriately completed, liaising with H. M. Coroner and making arrangements with funeral directors. There is also an area of this office which is used by the doctors who need to be involved in the process post-death – completing death certificates, making referrals to the Coroner etc. There is a further separate office which is used by the Chaplains and they can provide pastoral support here. A further office is used by the local authority registrar who registers deaths on-site. These changes ensure that a bereaved relative coming to the hospital to complete administrative processes has access to everything in one place. They can obtain the death certificate, register the death onsite without the need to make appointments or travel elsewhere, and if required, can access pastoral support immediately. The area is also publicly accessible in the main atrium of the hospital which means relatives do not have to report anywhere before being escorted to the office as was previously the case.

The whole experience now is centred on meeting the needs of the relatives and ensuring that the process is as smooth and kind as possible. The Daisy Bereavement Centre has also had a positive impact on Trust staff and on external providers such as funeral directors and families. Approximately 150 families each month use the Daisy Centre and we now routinely receive comments about the changes and about the impact they have had.

Families comments:
“I would like to add that the temperament of the Bereavement office staff helped enormously at the worse time on anyone’s life.”

“The support we received from the Bereavement support unit at Queen’s Hospital was excellent. At a difficult time and just before Christmas, an appointment was automatically made for us at the registrar, which meant my mother’s death could be registered before the Christmas break.”

“Bereavement suite very good, needs to be five days a week! ”

“Like the fish, it’s very calming and comfortable and peaceful.”

“Very nice with the fish tank they are relaxing, the chairs are comfortable and its calming.”

“Staff are friendly, good to have all in one place, bigger fish tank needed.”

“Intimate, people do not take much notice because of the situation, clean and friendly.”

“Like the fish tank and the way it is set out, very friendly staff”.

“It’s comfortable, clean bright and the toilet facilities are pleasant, helpful staff.”

Funeral Director comments:
“Our staff so much prefer the new access via the Daisy Centre which is so much more streamlined. This system is so much better than the previous arrangements. As you can appreciate we deal with countless other hospitals in London and Essex and the service that you provide exceeds any other bereavement offices.”

“The boys have asked me to email you and tell you how much easier it is for them to collect Doctors’ papers now that you have moved office. I am sure that this is also the case for our families when they come to register. Any changes can often cause the lads to groan but I can happily say that they are all delighted with the move.”

Staff comments:
“It’s a better environment than the ITU relatives’ room”. Registrar in ITU

“It’s a calm, clean and neat are. The fish tank is calming and the plants look nice”. Junior Doctor Mandarin Ward

“Soothing, likes the fish and the fact tissues and leaflets are available”. Junior Doctor Sunrise Wards

“I have found the new Daisy Centre to be more appropriate space for the bereaved. It is private and quiet and having chaplaincy and a registrar in the same centre is clearly convenient for the bereaved and the staff”. Mortuary Manager

“The area where families wait to be seen is a quiet area away from the bustle of the rest of the hospital. There is plenty of comfortable seating and families often look at the leaflets supplied while they are waiting. The fish seem to be a popular feature and some people make use of the toilet facilities while they are here rather than having to use the public ones. Overall the atmosphere is calm and relaxing with plenty of space for people to wait”. Registration and Ceremonies Officer – London Borough of Havering

The Daisy Bereavement Centre continues to grow and adapt to the needs of families. We have introduced fresh water for relatives, flowers and background music. We currently have a local authority registrar onsite 3 days a week but they are so impressed with the experience that we are able to provide to families that they are exploring increasing this to 5 days a week. We continue to evaluate the service formal feedback mechanisms such as the bereavement questionnaire and also from informal conversations with families. We are currently exploring how volunteers can add value to the experience families have in the Daisy Bereavement Centre. We believe very few NHS Trusts have a dedicated bereavement centre but the impact the development of this has had on relatives has been significant.

Initial communication about the changes took place via email newsletter at the time the change happened. The daisy bereavement centre then had a formal opening by the Chief Executive which staff, patient partners and local partners were invited to attend. There was media coverage locally and articles in the local papers. New signage has been put in place around the hospital. The hospital booklet (“because we care”) that is given to relatives when a patient dies has been changed to include the daisy bereavement centre new information. The centre is publicised internally by word of mouth from staff who access pastoral support themselves or who have accessed this on behalf of bereaved relatives.

The initiative has strengthened links between the Bereavement Department and the Mortuary Department as families often see their loved one in the Chapel of Rest in the mortuary and then come to the Daisy Centre to register the death.

We have a duty of care to the patients who access care and treatment in our hospitals but sometimes they die. We believe our duty of care is then to the relatives of that patient. We listened to what families were telling us about their experiences after they had lost a family member. The concept of single centre that can meet all of the needs of relatives at a time when they are most distressed, was very simple and it was very easy to engage people to help bring the vision to reality. There have been negligible costs associated with the project with the exception of the IT hardware for the local authority registrar.

The learning from the project is to include everyone as early on and be clear in the vision you are communicating. Having the evidence of poor experience to hand in the form of bereavement questionnaires made it easier to engage staff and this created a “solution finding” mentality from the outset.