Demographics and overview
Three quarters of respondents were female (75.3%: n = 201) and four in ten (40.7%: n = 108) were over the age of 60 years. Children of the deceased were the largest group of respondents (44.3%: n = 117), followed by husband (18.9%: n = 50) or wife (13.6%: n = 36), including civil partner. Over half (57.4%: n = 151) of the deceased were male, with (51.9%: n = 138) being over the age of 80 years. Almost three in ten (28.8%: n = 74) of the people that died, had a stay of between 2 days and 2 weeks and one fifth (20.2%: n = 52) had a stay of longer than 2 months.
This theme centred on good and poor communication and explored relatives’ experience of communication with the patient and family and within the multidisciplinary team. Many relatives highlighted good communication practices both by individual staff members but also within and across multidisciplinary teams to patients and their family members:
“The care and attention shown to my brother was excellent. At all stages of his illness we were kept informed and that was important to me, my wife and family.”
Other relatives reported that staff communicated in a timely, sensitive and compassionate manner both to patients and their family members, this was a great source of comfort to them:
“There was always someone on duty to explain to us what was happening at all stages of his illness and eventually his death. This is a great comfort when you know your loved one is about to die. And it helps ease the pain of knowing they are going to pass away.”
Some relatives reported poor communication however, including lack of sensitivity and compassion by hospital staff.
“The Dr taking care of my mother’s needs, came into the room where she was lying still alive, and spoke over her bed telling me that there was no more they could do for her and they made her comfortable. My mother was still awake and listening to all this. I think maybe he should have called me outside to tell me this.”
Lack of communication or information being conveyed in what was deemed an inappropriate manner was also reported:
“…staff never appeared to have any time, a small number of staff took time to talk to my Dad, no conversation appeared to have been about his diagnosis/illness. I appreciate there are a lot of constraints on staff but surely it’s important to get the basics right.”
Relative’s comments indicated that communication of information in a supportive, timely and regular manner could be improved in EoLC. Interestingly, the issue of communication threads through most of the other themes in this study indicating that communication significantly impacts on all aspects of EoLC.
Meeting care needs
A large amount of data was coded under this theme, resulting in the emergence of several subthemes including the provision of personal care, staff skills and availability, pain and symptom management, emotional and psychological support, spiritual support and access to specialist palliative care outside normal working hours and at weekends.
Many relatives commented specifically on the skill level of staff members and particular mention was given to staff from different disciplines. Their skills, compassion and dedication were highlighted:
“As I’ve said throughout this survey I am amazed by the dedication, empathy and patience of doctors, nurses and ancillary staff…My family could not fault our experience at all.”
The high skill level and dedication of staff left a significant impression on relatives. Findings illustrate that all staff, whom patients and families come into contact with, have a critical influencing role in a patient’s end-of-life journey and care. The positive impact of therapeutic relationships between staff and patients were also emphasised by relatives:
“… we had the opportunity to build relationships with the staff there and they built a relationship with my dad.”
While many relatives praised the high skill level of staff and their ability to meet care needs, some relatives indicated that care could be improved. Many relatives indicated that while the patient’s pain was well managed, and the patient was well cared for, all care needs did not always seem to be fully met. Relatives cited staff shortages as impacting on the provision of patient care. Relatives indicated that the management of psychological and emotional needs, in line with patient preferences, at end of life could be improved. In addition, spiritual care was seen as an important aspect of EoLC that was perhaps not always fully considered and responded to by hospital staff. One relative noted the importance of the emotional support provided by hospital staff and the positive impact this had on the family:
“Nurses, carers, staff and doctors were truly excellent with our father. Their genuine concern and tenderness was above the call of duty … the carers maybe just held his hand and consoled him and told him things would be OK. This meant so much to my family…we will be forever in the nurses and staff debt…”
However, several of the comments relatives made about the management of emotional needs were negative in tone and referred to ways in which hospital staff failed to meet patient care needs and adequately address relatives’ concerns.
Several relatives commented on the spiritual care within the hospitals. Those that shared a positive experience, referred to the important role played by the Chaplain or pastoral care worker in providing spiritual care to patients at the end of life and the clear recognition of patients’ needs in this respect. A small number of relatives shared their negative experiences of spiritual care during the patient’s last admission. The emphasis here was on the lack of consideration of the individual patient’s wishes regarding spiritual and religious matters. In addition, the importance of spiritual care for some patients was not always recognised by hospitals or staff: “Maybe there could be a little more focus on spiritual needs for patients across all cultures and a proper room or oratory available to all.”
Many relatives also commented on palliative care provided to their relatives. Some relatives had an extremely positive experience of the specialist palliative care team involvement and valued the unique skills which this team could offer:
“When the palliative care team in the hospital joined forces with it all, it was even better. They got her back into pyjamas she was less a patient, more cared for as a human being who was very ill.”
While the involvement of the specialist palliative care team was welcomed, some relatives expressed surprise and dissatisfaction that there was no access to specialist palliative care at the weekends:
“I found it strange that the “hospice team” did not work weekends!!! This makes no sense at all. My mother died on a Sunday and we could have done with their support instead we had a weekend staff who were awkward dealing with the situation.”
Dignity and respect
Most relatives indicated that they and the person who died were treated with dignity and respect and experienced kindness and compassion. However, some families reported negative experiences. Relatives referred to the impact the dignity and respect shown to patients had on their overall hospital experience. One respondent reported:
“The most impressive aspect was the degree to which the team made us feel that our Mother’s wellbeing was important, that our feelings were respected and there was a real sense of staff caring and not viewing the situation as “one of many cases” – which of course it was.”
Other relatives had differing experiences and for some they believed dignity and respect was lacking in the care provided:
“We argued that she as a person deserved her dignity and privacy around herself in the last hours of her life. We also felt that it was not fair to either her large family or the other ward patients that my mother’s final hours be lived out on a hospital ward.”
There were many positive comments provided about occasions where kindness and compassion were displayed to patients and their relatives. These often related to the attitude of staff, their professionalism, interpersonal communication and the ways in which they engaged with patients, their families and friends:
“He was called by his name, his name was used when carrying out any procedure, even though some of the time he was unaware. The staff ... were kindness itself. We can never underestimate the power of kindness.”
Findings in this theme fell under four sub-themes: care in a single room, hospital facilities, route of admission and atmosphere in the ward. Interestingly, privacy was viewed as an overall key factor influencing a patient’s end of life experience. The importance of having access to a single room was repeatedly emphasised as making for a better overall hospital experience:
“As mam deteriorated she was transferred to a private room with an ensuite. Here we were offered as much access to mam and could stay overnight if we wished.”
Other relatives advised that as they were in a shared ward, they had to be mindful of other patients and this lack of privacy was distressing for them. Some relatives, who were unable to access a single or family room, described how this significantly impacted on their relatives’ experiences in a negative way in the days before they died. One relative commented on the noise in the ward made by staff and other visitors on the day of their family member’s death:
“During the day, when mam was in effect dying I found it hard to hear other people’s visitors laughing and Hoovers, cleaners shouting…We were really hoping that we could have a private room.”
Some relatives questioned the accessibility of the hospital for those receiving end-of-life care. Relatives also reported that access to beds for terminally ill patients was often problematic, particularly as the only process for admission to hospital, even for patients who were well known to the hospital, was via the Emergency Department. This experience was described as extremely stressful and relatives deemed the Emergency Department as being an unsuitable environment for terminally ill or older patients to await admission to hospital:
“As he …was diagnosed as a terminally ill patient, he should have been seen straight away by a doctor from the team that looked after him. I think the hospital should really consider their procedures surrounding admittance of terminally ill patients.”
Other relatives shared more positive experiences about the suitability of the hospital facilities, mainly referring to the general atmosphere in the ward or room as ‘ideal’ or ‘peaceful’.
The importance of having access to a family room on the ward to facilitate difficult, sensitive conversations in private with the medical team was commented on by many:
“The consultations about the condition of the patient were very informative. We did not like the fact that the consultations were held in the corridors, this was not the best or most comfortable place but the doctors could only use what space was available.”
Relatives identified access to a family room and overnight accommodation as a crucial resource, which greatly enhanced their care experience. Having access to a family room was ‘useful’ or ‘vital’ allowing privacy and unrestricted visiting for which families were extremely grateful:
“We were hugely grateful for the use of the family room and for the chance to be with my husband as a family in his final days. As a large family, our presence in the ward was tolerated in a very compassionate manner for the most part by the nursing staff. For this we are extremely grateful.”
Other relatives acknowledged the importance of having access to a family room but highlighted the need for adequate facilities in the room, such as tea and coffee making facilities and a bright, comfortable environment:
“[The] Family room is a benefit but in this case the room was full of old furniture and not very comfortable and two families waiting at a time which limited privacy.”
Many stressed the need for accessible, dedicated family rooms with appropriate facilities on all hospital wards to support the EoLC experience for patients and their family members.
Support for family members
Relatives suggested several ways during EoLC where they believed additional support for family members could be provided during the patient’s stay in hospital. These included;
Privacy and sensitivity;
Affordable parking and ease of access;
Support at the time of death;
Support from the social worker; and
Support from taking part in the survey.
During the patient’s stay in hospital, relatives appreciated the “courteous and sympathetic attention” that was given and being allowed to spend precious time with their sick relative. Other relatives drew attention to situations where staff displayed great sensitivity and thoughtfulness:
“The doctors and nursing staff were very sensitive when telling us the difficult news that my mother was going to die. The staff in [name of ward] particular were amazing and as a family it was helpful to be with mum the whole time. We were very lucky that my mother was given a room of her own...”
Other relatives reported struggling with knowing how to talk to their family members about the fact they were dying and stated they would have appreciated support and advice from staff in relation to this:
“I did not know who to approach re: telling my husband he was dying, I knew years ago the ward sister was the guide for this. I did seek advice from one staff member … her most unhelpful answer was “just ask him if he has anything he wants to say to you.”
The issue of unrestricted visiting was raised by relatives and their comments emphasised the stress and frustration felt by family members who were “not given the opportunity to visit outside of visiting hours.” Out of hours visiting for relatives is permitted in both hospitals when a patient is seriously ill or dying, however, several relatives were not made aware of this. Relatives reported problems with the financial cost of car parking which caused additional stress at what was already a very difficult time for them. They suggested that the cost of parking in hospitals was too expensive:
“The cost of parking was outrageous. Given that we were there for 11 weeks, it would be nice if family members could get some help with this cost.”
Feedback from relatives about their experiences after the death of their loved one were mixed. Relatives described the support they experienced in differing ways. One commented that:
“They laid my father out lovely, gave us a lovely room with candle and flowers and gave us as much time and space as we needed but yet were there if we needed them or wanted to ask any questions.”
Another relative had a less positive experience and reflected on the upset caused by not being able to view their relative’s body in the hospital mortuary over the weekend, when release of remains were delayed preventing funeral arrangements to proceed.
Some relatives were appreciative of the sympathy displayed by the hospital whether in person, by a letter or card or remembrance service:
“Receiving a hand written sympathy card from the sister [nurse manager] in charge of his care was very special. It was personal and comforting.”
Other relatives commented on having accessed bereavement counselling offered and that they found this support extremely helpful. One relative described what she thought was “exceptional” bereavement support that she received:
“I have to say that the aftercare that I received when I arrived at the hospital was exceptional, especially from the nursing staff. I was contacted the next day by a bereavement counsellor who was more than helpful and continues to support me 6 months later. Outstanding work by all in an extremely difficult situation.”
Several relatives highlighted bereavement support that they would have liked to receive from the hospital. These included;
Timely bereavement information
Follow up contact from the bereavement counsellor in the hospital (for example, 3 months’ post-bereavement)
Provision of a memorial service
Provision of links to people who have experienced a similar bereavement
Information regarding supports and financial entitlements available to the bereaved.
A subtheme to emerge was that of the important role of social work in providing support to family members during this time. Many relatives acknowledged the beneficial help and support which the medical social worker was able to offer and the useful role of family meetings in providing information and facilitating decision making. Relatives appeared to have mostly positive experiences when they could access support from a social worker. Some relatives however, were unhappy that they were not able to access help from a social worker, in a timely manner when they felt they really needed it:
“I did not get the help I needed at the proper time – no social worker...I live alone, no relatives. Had to do it all myself, with the help of a friend.”
An unexpected finding was that relatives spoke about the cathartic process of completing the survey. It gave relatives a ‘voice’ to describe their experiences, provided an opportunity for reflection and many indicated that they gained support from taking part in the survey. Some relatives appreciated the opportunity to express their gratitude to the hospital for their “dedication and professionalism” while others used the opportunity to “express their feelings” about aspects of EoLC provided to them and their relatives. It appears that some relatives welcomed the questionnaire as an opportunity to report on their experiences and that of their relative who had died. It was viewed as an opportunity for their voices to be heard on their end-of-life care experience:
“I understand that this survey has little to do with the prescribed treatment of our mother and how it affected her. It is however the only platform we have had so far to state our feelings on this matter.”