Over a 15-month period, 38 women with MBO were identified for inclusion from the clinical recruitment site in this study, patient characteristics are shown in Table 1. The median interval from initial diagnosis of ovarian cancer to the development of bowel obstruction was 27.5 months (range 1-184 months). More than half (22 patients) were considered to have a good performance status, performance status 0 to 2, whereas 17 patients had unknown or poor performance status; performance status 3 and 4. From these 38 women, 26 women were considered for HPN and 20 were interviewed (Figure1). None of the patients who received HPN developed a line infection. Characteristics were similar between those women interviewed and those who were not interviewed. In addition, 13 family caregivers were recruited. A total of 57 interviews were conducted, with participants being interviewed up to four times.
Table 1 Patient characteristics at the time of bowel obstruction.
|
Interviewed (n=20)
|
Not interviewed (n=18)
|
N (%)
|
Age, mean ±SD
|
67 (7.5)
|
64 (10.1)
|
|
Stage at diagnosis
|
|
|
|
Stage 1
|
1
|
2
|
3 (7.9)
|
Stage 2
|
0
|
1
|
1 (2.6)
|
Stage 3
|
16
|
15
|
31 (81.6)
|
Stage 4
|
3
|
0
|
3 (7.9)
|
Missing
|
0
|
0
|
0
|
Histology at diagnosis
|
|
|
|
Serous
|
15
|
16
|
31 (81.6)
|
Endometrioid
|
1
|
0
|
1 (2.6)
|
Clear cell
|
1
|
1
|
2 (5.3)
|
Mucinous
|
0
|
1
|
1 (2.6)
|
Adenocarcinoma NOS
|
2
|
0
|
2 (5.3)
|
Carcinosarcoma
|
1
|
0
|
1 (2.6)
|
Previous surgery
|
|
|
|
Total anterior hysterectomy
|
18
|
14
|
32 (82.5)
|
Bilateral-salpingo-oophorectomy
|
17
|
12
|
29 (76.3)
|
Omentectomy
|
15
|
14
|
29 (76.3)
|
Re-laparotomy
|
4
|
4
|
8 (20.5)
|
Chemotherapy at BO admission
|
|
|
|
Total number
|
12
|
13
|
25 (63.0)
|
Platinum based
|
7
|
7
|
14 (37.0)
|
ECOG PS at BO admission
|
|
|
|
0
|
1
|
0
|
1 (2.6)
|
1
|
5
|
3
|
8 (21.1)
|
2
|
7
|
5
|
12 (31.6)
|
3
|
3
|
4
|
7 (18.4)
|
4
|
0
|
1
|
1 (2.6)
|
Unknown
|
4
|
5
|
9 (23.7)
|
ECOG PS= Eastern Cooperative Oncology Group performance status. No statistical significant differences
Quantitative Data
Nutritional status
Nutritional status of the women at the time of MBO was poor; body composition measured on CT scans showed that 30/33 had low muscle mass, and 10/33 women were obese. CT scans were unavailable for five women. The mean time between CT scan and date of discharge was 53.41 days (SD±63.9). The Glasgow prognostic score, a marker of systematic inflammation used to predict survival in cancer with a higher score associated with poorer prognosis, was 2 in 21 women, 1 in 14 and 0 in 3 [15]. Details regarding nutritional status are presented in Table 2.
Table 2 Nutritional status of patients with ovarian cancer at the time of bowel obstruction
|
Interviewed (n=18)
Mean±SD
|
Not interviewed (n=15)
Mean±SD
|
Total
(n=33)
Mean±SD
|
Fat mass (kg)
|
21.07 (5.86)
|
22.94 (7.55)
|
22.10 (6.7)
|
Muscle mass (kg)
|
30.79 (2.88)
|
32.77 (5.18)
|
31.83 (4.2)
|
Muscle Index (cm2/m2)
|
31.51 (4.49)
|
33.54 (6.01)
|
32.59 (5.3)
|
Missing CT scans
|
2
|
3
|
5
|
Body Mass Index (kg/m2)
|
24.10 (6.41)
|
23.06 (3.72)
|
23.67 (5.42)
|
BMI missing
|
0
|
4
|
4
|
C-reactive protein (mg/l)
|
62.84 (93.59)
|
73.44 (67.91)
|
67.86 (81.5)
|
Albumin (g/l)
|
33.10 (6.14)
|
36.89 (6.40)
|
34.89 (6.5)
|
Missing blood results
|
0
|
0
|
0
|
Parenteral nutrition and survival
Of the 38 women in the cohort, 32 received PN; infusions were daily and self-reported oral intake was minimal. From 32 patients who received PN, 4 died before discharge, 17 were discharged on HPN and 11 left without HPN. For the patients that were discharged without HPN, the reasons were: end of life care (n=4), assessed as unsuitable by medical team (n=3) and patient offered HPN but declined (n=4). Median length of receipt of PN for all 32 women was 54 days (range 2 to 501) and median length on HPN for 17 women was 91 days (range 6 to 441).
At the study conclusion 36 of 38 women had died. Median survival from admission with MBO for all 38 women was 70 days (range 8 to 506). Survival from admission with MBO for all the 32 women who received PN was 81 days (range 10 to 506), for the 17 patients who had HPN was 156 days (range 46 – 506) (see figure 2) and for 6 women who did not receive PN was 20 days (range 8 to 109).
Interviews
In total 20 women were interviewed; 11 in hospital and 9 in hospital and up to three times at home (Table 3). Family caregivers caring for the patients were interviewed on their own where possible so they could freely express their views; 17 interviews with 13 family caregivers were conducted without the woman present.
Table 3 Time, place and numbers of patient and caregivers taking part at each time point
|
Interview 1
|
Interview 2
|
Interview 3
|
Interview 4
|
Total
|
Time from initial discharge
|
|
30-48 days
|
70-110 days
|
251-329 days
|
|
Patient in Hospital (n)
|
20
|
|
|
1
|
21
|
Patient at Home (n)
|
|
9
|
7
|
2
|
18
|
Total
|
|
|
|
|
39
|
Carer at hospital (n)
|
8
|
|
|
|
8
|
Carer at home (n)
|
5
|
8
|
3
|
1
|
17
|
Total
|
|
|
|
|
25
|
n = number of patients or carers taking part at each time point. 13 carers and 20 patients took part in 57 interviews. Seven interviews involved more than one person; either family caregivers were interviewed together or family caregivers and patients.
Themes
Four major themes were identified from the data; “competing priorities” as patients experienced PN as one facet of their illness, “gains”, “losses of normality” and “balancing losses and gains.” Quotations representative of the emergent themes are given. . Pseudonyms are used for all participants. For the family caregivers their relationship to the women is also indicated. Further exemplars of the themes are given in additional file 1: supplementary material 1, all names used are pseudonyms.
Theme 1 Competing priorities
Women described the complexity of their ovarian cancer journey. They had had many treatments, appointments, major setbacks and minor annoyances. In one sense HPN was just another facet of their illness and additional experience competing for attention amongst many. For example, one woman described the irritation she had with her GP’s surgery. “I sent a sample off to the doctor on Thursday and they just sat on it for four days…so I’m a bit annoyed. That’s nothing to do with the feed” (Caroline).
When PN was started in hospital it was unexceptional for most women, as they generally expressed the view that in this environment it was normal to undergo interventions and to be surrounded by medical equipment. On the ward, PN was administered by the nurse as are other fluids or drugs and in this setting it is unremarkable: “they come along and they flush it, and then they set something up on the drip and they will say, that is ready for going on” (Betty). One exception was a patient who focused her anger about not eating on the PN as she felt receiving nutrition in this way was similar to being fed like a horse with a nosebag.
In contrast to their experience in hospital, on discharge HPN did stand out as it was unusual to have medical procedures at home: “initially when this was being discussed with us…I thought it was probably less medical than what it is” (Alice, daughter).
Theme 2 Gains
Survival
Both women and family caregivers viewed HPN as offering gains. For women, the main advantage was the extra life it gave them, and this remained so throughout the course of the interviews: “If I don't have the [HPN], I won't be here. There's no other way, is there?” (Kirsten). Women viewed HPN as a ‘lifeline.’ If they wanted to continue living then nutrition was necessary and HPN was the only way that patients could receive it: “It's either die with food or [HPN] for the rest of your days and I'd sooner live and be on [HPN]” (Sam).
Quality of life
Women perceived HPN as not only improving their quantity, but also quality of life as they could be out of hospital and at home with friends and family. As one patient commented: “spending time with family when you get to, like, my stage, is the most important for everybody” (Sylvia)
Being at home meant that patients were able to achieve an element of normality in their lives. It was important for patients having aspects of life that were unchanged by their illness. Patients were keen to maintain their ordinary routine and valued any activities of daily living they were able to manage, for example one patient appreciated being able to get out into the garden “I went in the garden the other day and did a bit of tidying up” (Laura)
Receiving HPN enabled patients to engage in enjoyable activities, sometimes outside of the home. For a subset of patients, these activities were goals that they wanted to achieve such as preparing for Christmas or organising a family party: “I’ve sorted all Christmas out” (Stacey).
Some patients discussed HPN as having health benefits. They commented that it gave them more energy or strength: “it’s given me, yes, more energy” (Mabel). Some thought it stabilised or increased their weight: “I think I've put a little bit of weight on” (Penny).
Family caregivers
Family caregivers echoed the views of patients in that they saw the principal gain as allowing their relative extra time. As one husband said “It’s keeping her alive really. That’s the big advantage.” (John, husband). Two husbands saw it as giving their wives strength or energy: “it’s going to help her do what she wants to do” (Derek, husband).
Caregivers were also appreciative that the treatment could be given at home as this would facilitate normality: “I’m looking forward to her being able to come out of hospital and go home and have the [HPN] at home and, sort of, have some sort of normality to life” (Alice, daughter); for example making it easier for friends and neighbours to visit: “our friends and neighbours and relatives can get easy access to her” (Joseph, husband).
For the family caregivers themselves, the patient being at home meant they were saved from travelling into the hospital. For three family caregivers this was a big advantage as they either lived a long distance away or could not travel there easily on public transport.
Theme 3 Loss of normality
However, the gains that patients and family caregivers perceived from HPN came at the expense of many losses to normality.
Curtailment of activities of daily living
Disease progression and HPN gradually eroded patients’ ability to undertake activities of daily living. A massive loss in patients’ lives was eating as having MBO meant their oral intake was minimal.
Disruption to sleep was another problem faced by patients. HPN was given overnight and patients received up to three litres of fluid. This volume meant that some patients needed to make frequent trips to the toilet “It would be wonderful if I could have even five hours sleep without a break” (Marilyn).
Although some patients managed to go out, on the whole patients’ social lives were curtailed. Some only left the house for hospital appointments as they did not feel well enough to go anywhere else. Others would occasionally go out, but for as short a time as possible as they had a nasogastric tube in place and found it challenging when people stared at them.
Limiting bodily freedom
Patients’ freedom of movement and control of their own bodies were limited by the physical attachment to HPN and drainage bags. When commencing HPN, the weight of the feed was a big issue: “It’s difficult, yeah, especially going upstairs, because I’ve not got much energy, so usually my husband… has to take it for me” (Caroline, 60). Even in the morning when the bag was empty patients found being attached to it restricting. One family caregiver referred to it as “a ball and chain” (John, husband).
Moving about attached to tubes and bags was most problematic for frailer patients. These patients commented that health care professionals would underplay the problems that they would have at home: “It wasn't as easy as it was made out to be” (Belinda).
However, some patients found the most restrictive aspect was their venting gastrostomy. The HPN was only attached overnight whereas they were only free from the gastrostomy when they were showering: “when I go in the shower and everything, I can…take both tubes off, and I'm a different person” (Kirsten).
Imposed routine
In addition to losing their own routine, patients were subjected to new routines not of their choosing. They had to deal with the bureaucracy surrounding healthcare services. The patient or family caregiver needed to be available to receive deliveries of feed. Patients also had healthcare appointments to attend, with their oncologist and for monitoring their HPN.
However, the main restriction was the nurses’ home visits and the patients’ days were scheduled around those morning and evening visits. Patients found the nurses cheerful and efficient and no one was critical of nursing care. Nevertheless, for some the mere presence of the nurse was a twice daily reminder that they were ill and the clinical environment imposing itself on their home.
Despite the loss of the patients’ own routines, new routines were established and became accepted. “It just becomes a way of life really, you know what I mean, this is how your day goes and this is what it is. A nurse comes and takes it off in a morning and then a nurse comes at night and puts it back on” (Belinda)
Changes to the meaning of home
HPN introduced a myriad of equipment into the home so that it became a medical environment. One patient was shocked at the amount of equipment even though she had been told about it. Prior to starting HPN, some women were concerned where the equipment would go, although they subsequently managed to accommodate it.
Changing relationships
Some women’s relationships changed when their relative became their main carer. For most of the women this was their husband. As the women became unwell they were unable to carry out some household tasks such as cooking. These tasks fell to the family caregiver alongside physically caring for the patient, although assistance was provided by district nurses and healthcare assistants for frailer patients. Several patients commented that their relative did not mind doing this for them “I’ve done things for him. He can do things for me” (Michelle), although some recognised that it caused a strain on their family member. One patient was keen to protect her husband as much as possible, remarking about her night-time bathroom visits “I’ve tried creeping, ‘cause I don’t want to wake him up” (Penny). Her husband on the other hand was keen to help: “I’m awake most of the night listening for her, but she tells me not to help her” (Simon, husband).
Family caregivers
Overall, family caregivers thought HPN was beneficial for their relative. However, HPN meant that they had to contend with various losses. Family caregivers reported a physical toll, for example if they were frail themselves, carrying heavy HPN bags for patients could be problematic. Some family caregivers reported financial implications, particularly if they were self-employed: “as for going out and taking a contract on or something. It’s just not feasible” (John, husband). Free time for family caregivers was limited. They were restricted from going out by the number of healthcare professionals coming to their home. If the patient and family caregiver did manage to get out they needed to be back in time for the HPN nurses’ arrival. In addition, there were social impacts. For example, as the patient could not eat, husbands ate alone and some had to learn to cook for the first time: “Not my strong point…No, I burn water” (Chris, husband). Supporting their relative led to some family caregivers neglecting their own health: “I am physically falling to bits” (Scarlett, daughter).
Family caregivers wanted to care for their relative, but this could sometimes be difficult leading to contradictory statements or attitudes. One husband said that caring is “what you sign on for when you get married” (Simon, husband). However, at the end of the second interview, he reported feeling like a “prisoner” being very limited in the time that he could go out. Moreover, there were two families who said that they wanted their relative home as soon as possible. However, when the discharge process was started, they brought up questions related to the fitness of their relative to cope at home.
Some family caregivers wanted more information. They felt they received information in an ad hoc manner if they were present when a healthcare professional visited a patient, but otherwise they could miss out: “facts and information had been given to my mum that I hadn’t been privy [party to] to, I think I should have been privy [party to] to it” (Alice, daughter).
Theme 4 Balancing gains and losses
Stopping HPN
Given the losses experienced, patients were asked if they had thought about stopping the HPN. Stopping HPN was largely mentioned in a general way by oncologists, but patients did not seem to take this on board as they were surprised by the question. Seven of the nine patients having HPN were unequivocal during all the interviews they would not stop it: “No, why would I do that?” (Laura). The reasons cited by four were they would be dead or it is keeping them alive. One said that they would be hungry and another that it had become a way of life. One patient would perhaps think about it if she became very unwell in the future: referring to that time she said: “when I get to the point where I’ve got to say, oh, enough is enough, it won’t matter then, but until that point comes then I just have to fight, keep going” (Stacey). This patient was unusual as a doctor at the intestinal failure unit had asked her to think about what she wanted to do in the event of her developing sepsis from a central venous catheter infection. Another patient, during her second interview, referring to stopping, said “I do get the odd moment when I feel really tired” (Marilyn). However, it was not something that she had seriously considered. In subsequent interviews when she was feeling a bit better, she did not entertain the idea of stopping.
Hope
The theme of hope was useful for examining how patients viewed their lives along their journey of HPN. Early in the process, some patients were still receiving chemotherapy and hoped that their condition would improve sufficiently be able to eat again. Such patients viewed this as a genuine possibility.
Later on, patients hoped for things in a more wistful way. For example, one patient said she would like to go on holiday, but realised that this was not possible at her stage of illness. Another said that she hoped some treatment might be found to deal with the MBO.
Other patients at this stage had more contained or realistic hopes. One patient hoped for a bit more time and another that she would be pain free at the end. In contrast, one woman said that she did not hope for anything. However, on further discussion she was planning a night away with her two daughters indicating she was looking forward.