Background
Local context
Methods
Data analysis
Ethical approval
Results
Carer Questionnaire
Summary of results from yes or no questions in questionnaire to Carers: See Table 1
Yes | No | Total | |||
---|---|---|---|---|---|
Question | N |
%
| N |
%
| |
Q2. Could you have done with more nursing help? | 57 |
20
| 230 |
80
| 287 |
Q3. Did you feel that the nurses knew enough about X condition and how to care for him/her? | 262 |
92
| 23 |
8
| 285 |
Q5: Do you recall any difficulties the nurses experienced in obtaining medical support or medication for X? | 51 |
18
| 231 |
82
| 282 |
Q6. Were agency staff used to support the care package? | 211 |
76
| 65 |
24
| 276 |
Q7: Did the doctor from the Out of Hours Deputising Service visit at any time? | 137 |
49
| 143 |
51
| 280 |
Q11. Did you have any difficulties contacting the Hospice at home Team? | 21 |
7
| 265 |
93
| 286 |
Q13. Did X die at home? | 250 |
87
| 39 |
13
| 289 |
1) Quality of the nursing care
It would have been more helpful to (patient) if more of the nurses had understood and known more about lymphodema and been able to help him with exercises and putting stockings on etc. [Comment number 111]
Continuity would have helped ..at first (they) did know how to move him without hurting him and what he needed. Some who didn't know him didn't understand the condition and what was happening therefore were not so careful with movement, etc. Also everything had to be explained every time. [Comment number 111]
Let me say initially that this service was a Godsend to me. Certain times when it was necessary to move (patient) more help would have been appreciated. [Comment number 304]
Agency staff were very caring and helped all they could to make X comfortable at home. [Comment number 279]
All the time it was 24/7 – hardly ever the same staff -some were good – some not. I only had one agency girl who I wasn't keen with. She had the TV on all night, no ID. No uniform etc. I asked just for hospice girls. [Comment number 81]Three were very poor, one bitched about her work saying she was packing it in. One wouldn't sit with [patient] and her husband came early for her (12.45 pm Sat) but claimed time till 1.00 am. One night sitter lectured me on God saying it was his will that [patient] should suffer.' [Comment number 89]Three times they did not turn up. Once she rang in sick and we were told, but twice they just did not appear and one was on the night she died. [Comment number 122]
2) Medical Support
The doctor on duty refused to visit or issue prescription, our son was in agony from 10 pm until 6.0.am. This was disgusting, unprofessional and cruel and was only slightly relieved by the care and concern shown by the nurses. [Comment number 104]Insufficient morphine at chemists even though they confirmed enough by phone. [Comment number 100]
All doctors were extremely supportive and worked hard to achieve the level of care in very difficult circumstances – [Patient] symptoms were very hard to treat. [Comment number 286]
Before Mum was admitted to hospital we called the doctor which was Out of Hour's service – the call was 12.30. The doctor arrived at the following 9.30 – called ambulance – hospital 10.30. Not very happy with service (own doctors called on Mum every other day and were great). [Comment number 176]Our own doctor visited when (patient) came home – this was during normal times. But through some lack of communication eight or nine hours elapsed before a doctor came to certify my husband's death. [Comment number 129]
District Nurse Questionnaire
Yes | No | Total | |||
---|---|---|---|---|---|
Question | N |
%
| N |
%
| |
Setting up the Package | |||||
Q1. Did you set up the initial package of care? | 296 |
58
| 212 |
42
| 508 |
Q2. Were the hospice at home team involved in the initial planning of care? | 399 |
82
| 86 |
18
| 485 |
Q3. Did hospice at home Team change input of care package? | 222 |
45
| 267 |
55
| 489 |
Shared approach to care/Communication | |||||
Q4. Do you feel that you contributed to the design of care? | 486 |
97
| 17 |
3
| 503 |
Q5. Evidence of a shared approach? | 463 |
95
| 26 |
5
| 489 |
Q6. Were you kept updated by hospice at home? | 436 |
90
| 47 |
10
| 483 |
Q7. Was the care package delivered as you understood it would be? | 453 |
93
| 35 |
7
| 488 |
Levels of support | |||||
Q9. Was your perception that the family coped well with the level of support offered? | 413 |
88
| 57 |
12
| 470 |
Q11. Could you have supported the patient to die at home without hospice at home? | 102 |
23
| 333 |
77
| 435 |
Impact on district nurse workload | |||||
Q12. Did supporting the patient at home cause undue strain on the District Nurse team? | 157 |
38
| 253 |
62
| 410 |
Place of death | |||||
Q10. Death at home? | 404 |
86
| 67 |
14
| 471 |
Was the place of death the appropriate one? | 450 |
97
| 14 |
3
| 464 |
Summary of results from questionnaire to District Nurses: See Table 2
[Patient] had needs during the night when the family found it most difficult to cope and on several consecutive occasions sitters did not attend. [Comment number 203]It soon became apparent that family could not cope. [Comment number 237]The family found the whole situation physically and mentally difficult. [Comment number 243]Not a reflection of the support offered, but the carer would not have coped as she didn't really want her husband to stay at home but was trying to respect his wishes. [Comment number 371]
We would not have been able to nurse [patient] at home without input from hospice at home. Their input was vital, to the family, both day and night and to the district nurse team. Because of [patient] his young wife and two children, the hospice at home team gave them support, physical and emotional day and night. [Patient] was comforted by their presence in the house as was [patient's] parents. I would also like to thank you all for the help and support you gave me and my team, it was much appreciated. [Comment number 266][Patient] was in retention of urine – the GP or myself did not pick this up as the family stated (patients) pads were wet. The hospice at home nurses palliative care experience and knowledge was paramount in this particular incident and we were grateful to the input. The collaborative approach proved to be very positive. [Comment number 353]
Sometimes the service is let down by the lack of staff – families feel let down when they have been promised sitters and then there aren't any [Comment number 438].Main carer very upset initially as patient unfortunately died the first night a sitter was arranged. Apparently the sitter informed the carer that patient had died without waking her when his condition deteriorated. Upset not to have been with him at the time of death [Comment number 106].
General practitioner questionnaire
Summary of results from questionnaire to General Practitioners: See Table 3
Yes | No | Total | |||
---|---|---|---|---|---|
Question
| N |
%
| N |
%
| |
Q1. Overall did you feel that the patient and family were sufficiently supported? | 427 |
96
| 17 |
4
| 444 |
Q2. Were you aware of any family/patient anxieties, which were not addressed? | 38 |
9
| 401 |
91
| 439 |
Q3. Did you feel managing this death at home caused any additional concerns within the practice? | 47 |
11
| 394 |
89
| 441 |
The main thing was that (patient) wanted to die at home. Without the support of the team she would have needed to go into hospital or hospice care. [Comment number 205]
(Patient) did not live long after her diagnosis but I know that her daughter and son felt supported by hospice at home and found her easier to manage. [Comment number 256](A strength was) knowing I had expert advice available if I needed it. [Comment number 313]
Obvious moral, medical and psychological support to the patient and family. Communication line was efficiently kept between GP/care people and patient and family. [Comment number 386]Good teamwork between hospice at home, nurses and GPs [Comment number 442]Enabled a very sick woman to come home from hospital and die comfortably at home with her family [Comment number 304].
We were told no staff available to offer patient support over weekend as waiting list – this resulted in patient's emergency admission to hospital. [Comment number 255]The communication from secondary and tertiary care was poor. (This is not a criticism of hospice at home service, which was fine but not started soon enough). [Comment number 151]
Her son panicked at the time of death, although death was expected, and dialled 999 that led to a chain of undesirable events, which probably [patient] didn't want. [Comment number 266]This man [patient] and his wife needed a little more help to face directly the issue of death. [Comment number 116]Not a good death 'unexpected collapse' paramedics attempted to resuscitate. But mostly due to patients refusal to discuss how he saw things going when he became unwell towards the end. [Comment number 365]
Death at home
I couldn't have gone through the whole thing without them, it was my wife's desire to die at home and I'm so grateful for the support to enable her wish to be fulfilled. [Comment number 234]He, I and our family, found this to be a very precious time. A time to say things he needed to say, get his affairs settled, his wishes made known and for myself and our family to give him our love [Comment number 80]
Mum passed in the best way possible; at home, pain free with all her family around her. I will be forever grateful to the district nurses and hospice at home team for allowing this and for helping her to die with dignity. [Comment number 16]My husband wished to have his care up to his death at home, it was also my wish. His passing was dignified and peaceful with his family at his side in his own bed in accordance with his wishes – wholly appropriate in our case. [Comment number 121]
He [patient] was admitted to ward – he asked to go into hospital rather than at home, it was his wish. [Comment number 467](Patient) was admitted to hospice for symptom control – her death was sudden. [Comment number 507]
The hospice at home team is a must if we are to nurse the dying at home. The district nurses can only give limited time on visits due to their caseloads. The hospice at home team can provide the care and support the patient and family require whilst going through this difficult situation. [Comment number 348]
I think we feel adequately supported by good access to the palliative care team. Overall we have found this an excellent service for our patients. [Comment number 443]
This caused a lot of strain in the practice due to the amount of time we needed to spend there, the difficulty in controlling the symptoms and the awfulness of the whole situation. [Comment number 251]We had concerns re out-of-hours doctor (previous concerns with other patients). Practice doctors provided additional support at weekends. [Comment number 434]