Background
Methods
Background and design
Development of the VOICES MaJam questionnaire
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What, if anything, do you feel was good about the care?
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What, if anything, do you feel was bad about the care?
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Please use the space below if there is anything more you would like to add about the care provided by the hospital to your relative/friend during their last admission.
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Is there is any other help or support that you would have liked to receive from the hospital since your relative’s death, please feel free to comment below
Sample selection
Data collection
Data analysis
Results
Demographic details of survey respondents and deceased patients
Gender (N = 349) | % (N) |
Male | 25.8% (90) |
Female | 74.2% (259) |
Age (N = 350) | % (N) |
18–29 years | 0.9% (3) |
30–39 year | 5.7% (20) |
40–49 years | 18.9% (66) |
50–59 years | 31.7% (111) |
60–69 years | 16.6% (58) |
70–79 years | 16.8% (59) |
80 + years | 9.4% (33) |
Relationship to the deceased (N = 350) | % (N) |
Children | 41.1% (144) |
Husband | 22.0% (77) |
Wife | 12.9% (45) |
Siblings | 10.9% (38) |
Other relative or friend | 8.0% (28) |
Parent | 5.1% (18) |
Gender (N = 347) | % (N) |
Male | 57.3% (199) |
Female | 42.7% (148) |
Age (N = 355) | % (N) |
18–29 years | 1.7% (6) |
30–39 years | 3.2% (11) |
40–49 years | 3.9% (14) |
50–59 years | 5.6% (20) |
60–69 years | 10.7% (38) |
70–79 years | 24.8% (88) |
80 + years | 50.1% (178) |
Length of stay in hospital during last admission (N = 342) | % (N) |
< 48 h | 18.1% (62) |
2 days – 2 weeks | 28.9% (99) |
2–4 weeks | 17.3% (59) |
1–2 months | 16.4% (56) |
> 2 months | 19.3% (66) |
Overall quality of care
Overall quality of care - last admission | Outstanding | Excellent | Good | Fair | Poor | Don’t Know | Total |
33.5% (117) | 36.4% (127) | 16.9% (59) | 7.2% (25) | 4.6% (16) | 1.4% (5) | 349 | |
Quality of care - staff group | Exceptional | Excellent | Good | Fair | Poor | Don’t Know | Total |
Doctors | 38.3% (129) | 33.2% (112) | 17.2% (58) | 6.2% (21) | 2.7% (9) | 2.4% (8) | 337 |
Nurses | 45.0% (152) | 34.6% (117) | 14.2% (48) | 4.4% (15) | 0.9% (3) | 0.9% (3) | 338 |
Other staff | 35.0% (115) | 33.7% (111) | 18.2% (60) | 5.2% (17) | 2.1% (7) | 5.8% (19) | 329 |
Question | N | P valuea | Phi valueb |
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During last 2 days, overall level of support in following areas: | |||
How well pain was relieved | 247 | P = .000 | .28 |
Had enough help to meet personal care | 295 | P = .000 | .48 |
Had enough help with nursing care | 308 | P = .000 | .55 |
Had adequate privacy | 313 | P = .000 | .40 |
During last admission | |||
Relief of pain | 279 | P = .000 | .57 |
Relief of other symptoms | 280 | P = .000 | .68 |
Provision of spiritual support | 249 | P = .000 | .45 |
Provision of emotional support | 255 | P = .000 | .58 |
Provision of support to stay where patient wanted | 218 | P = .000 | .65 |
Meeting care needs
Excellent | Good | Fair | Poor | N/A | Don’t Know | Total | |
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Relief of pain- last admission | 48.7% (163) | 25.1% (84) | 6.6% (22) | 4.5% (15) | 11.3% (38) | 3.8% (13) | 335 |
Relief of other symptoms – last admission | 42.8% (137) | 29.7% (95) | 10.0% (32) | 6.6% (21) | 6.3% (20) | 4.6% (15) | 320 |
Spiritual support – last admission | 39.4% (129) | 21.1% (69) | 8.6% (28) | 8.9% (29) | 10.4% (34) | 11.6% (38) | 327 |
Emotional support – last admission | 36.1% (119) | 20.3% (67) | 12.7% (42) | 10.0% (33) | 7.9% (26) | 13.0% (43) | 330 |
Strongly Agree/Agree | Neither Agree nor Disagree | Disagree/Strongly Disagree | Don’t Know or N/A | Total | |||
There was enough help to meet physical comfort needs in last 2 days | 73.3% (250) | 6.7% (23) | 8.2% (28) | 11.8% (40) | 341 |
However, a number of relatives also commented that pain was poorly managed outside of regular working hours and suggested that specialist palliative care team members should be available out of hours and at weekends to support the management of pain:“She was made comfortable with pain relief as she was in terrible pain and this obviously gave us some comfort at a terrible time.”
“Unfortunately there was no palliative care personnel in the hospital on a sat/sun and I really felt dad was in quite a lot of pain on those days. Emergency & locum Doctors attended dad but they seemed to lack experience of palliative care & were not inclined to give pain medication. On the Monday, the palliative care team returned to the hospital and dad’s pain relief medication was corrected and he received adequate pain relief. Dad passed away on the Tuesday morning.”
“The care of my mother … was outstanding; my mother was treated with love care and respect until the minute she died … They were so kind to her, doing small things such as putting curling tongs in her hair. This was on top of her usual personal hygiene and nursing care any concerns raised was immediately attended to … ”
“We felt the nurses were very overworked and just didn’t have the time to give my father the attention he needed and he was reluctant to ask/bother them.”
“ … he was not offered to speak with anyone regarding his diagnosis … His needs or wishes were not obviously discussed with him as he wasn’t offered any spiritual/counselling support following his diagnosis. This I know would have been important to him. I do not think he suffered physical pain in the last week of his life, but I do know he suffered emotionally which is every bit as bad and it shouldn’t be.”
Six in 10 respondents (60.5%: n = 198) indicated that the spiritual support provided was ‘excellent’ or ‘good’ with one in 11 (8.9%: n = 29) indicating it was ‘poor’.“I felt that the care was good because they helped him physically and emotionally.”
Communication
Did your relative know he/she was likely to die? | News of likelihood to die told in a caring and sensitive way | ||
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Yes, certainly | 18.4% (64) | Yes, definitely | 26.4% (58) |
Yes, probably | 27.0% (94) | Yes, to some extent | 13.6% (30) |
Probably not | 19.8% (69) | No, not at all | 2.7% (6) |
No, definitely not | 24.7% (86) | Patient did not know was going to die | 18.6% (41) |
Unsure | 10.1% (35) | Not told relative was going to die | 25.5% (56) |
Don’t know | 13.2% (29) | ||
Total | 348 | 220 |
“No one knows more than family, if close. We have comparisons so we can tell when things are changing. We knew the end was close. Not once could we communicate properly with staff on this … The day mum died, I was meeting with my sister in the café to work out when to tell my brother to come back from (name of country)... Last time I saw mum, the physio was testing her walking, so I left her early. It would have been better if the physio accepted her saying No and left us to spend a little more time, just chatting and relaxing in the short time before she died.” [13]
When respondents were asked if the news of their relatives death was conveyed in a sensitive way, over a quarter (26.4%: n = 58) of responding relatives (n = 220) answered ‘Yes, definitely’. A further one in seven (13.6%: n = 30) responded ‘Yes, to some extent’, while 25.5% (n = 56) reported that no one told their relative that they were going to die (Table 6). Respondents shared contrasting experiences of how ‘bad news’ was delivered:“On-going tests when my mother wasn’t strong enough for them and when it was clear she was dying.”
“The Doctor’s and nursing staff were very sensitive when telling us the difficult news that my mother was going to die.”
“Initial diagnosis of [a] fatal condition was delivered in a direct almost brutal fashion by a nurse. This may not have been the intended mode of delivery but this is what happened.” [13]
Hospital environment
“We were really hoping that we could have a private room. 2 hours before mam died, we moved into a 2-bedded room. It was better than being in the 6-bedded ward but still far from ideal. Not only for us, but for the poor woman who mam had to share with. I was grateful that mam died at midnight and the lady was asleep and the place was quiet and mam had a most beautiful death. … I think it should be a priority that there is a private room for patients & family to go to die. EVERYONE DESERVES THAT.”
Respondents commented on both the significance of a single occupancy room at end of life, and the impact on their dying relative and the family when a single room was not available:It would have been less distressing for all if he had his own room earlier. We were trying to keep him calm and other people on the ward were not that sick. I could never complain about this, his care as it was, was 100% excellent.”
“They allowed us stay with our mother, there was no single room available but the staff went over and beyond to get us a single room for the last two days of her life.”
“I cannot speak highly enough about the care the nursing staff gave to my relative. Unfortunately, the lack of availability of a single room was an issue. I was with my relative when she died as I stayed all night; she passed away early in the morning. My family (5 siblings) could not all stay and were not with my mum when she died. We were fortunate that she was sharing with a lovely lady who was VERY understanding of the constant visiting.”
“ … when she was moved to a single, private room, there was unrestricted visiting and overnight stays were allowed. This was very helpful as she died … while we were still present.”
Over two thirds of respondents (69.1%: n = 235) agreed there was enough privacy, however, almost one in six (17.4%: n = 59) indicated that there was not enough privacy.“I feel that a private room should have been offered as it was felt that we couldn’t talk loudly and share experiences, a lot of final speeches were whispered which I felt took away from the final goodbye.”
Care in a single room at time of death | Yes | No | Not sure | Total |
68.9% (241) | 26.3% (92) | 4.8% (17) | 350 | |
Adequate privacy in last 2 days of life | Yes | No | N/A or Don’t Know | Total |
69.1% (235) | 17.4% (59) | 13.5% (46) | 340 | |
Availability of family room | Yes, found helpful | No/Don’t Know | Did not receive | Total |
71.1% (219) | 4.9% (15) | 24.0% (74) | 308 | |
Support for relatives at time of death | Yes, definitely | Yes, to some extent | No/ Don’t Know | Total |
69.0% (240) | 24.1% (84) | 6.9% (24) | 348 | |
Sensitive care after death | Yes | Yes | No/ Don’t Know | Total |
94.6% (331) | 4.0% (14) | 1.4% (5) | 350 |
“We as a family never had a family room to talk to mam in private, everyone can hear your business in wards. Even on her last day when we were advised to come in. We had nowhere to make a cup of tea or sit in private we had to use a storage room, which just adds to your distress.”
Support for relatives
However, others had a different experience and would have liked more information about what to do at the time of death:“Quick access to my mother’s body in a private room. Quick arrival of a priest. Staff checking on me regularly yet giving privacy to grieve. Tea, sandwiches for family when they all arrived. No rush to leave the room, all at my pace.”
“More practical support the day of his death no one seemed to know what happened following the death e.g. arrangements for our undertaker to remove the body from the morgue etc. considering we had such a journey, staff were not helpful.”
“We deeply appreciate receiving a letter from the staff expressing their sympathy. Thank you.”
“We would have liked to receive a bereavement booklet and information on what services were available to us.”
Spoke to someone about feelings around death | Yes, found it helpful | Yes, found it unhelpful | No, did not, but would have liked to | Did not wish to speak with anyone | Total |
16.5% (57) | 1.4% (5) | 28.6% (99) | 53.5% (185) | 346 | |
Professional spoken to | Doctor | Nurse | Social Worker / Bereavement Counsellor | Chaplain | Don’t Know/Other |
28.2% (29) | 24.3% (25) | 29.1% (30) | 11.7% (12) | 6.7% (7) |