Abstract
Bowel obstruction is a frequent occurrence in advanced ovarian cancer affecting between 20–50% patients1. Parenteral nutrition (PN) can maintain adequate nutrition and hydration in these patients. Patients start on PN as inpatients and may go home on the treatment. Currently, there is uncertainty as to the role of PN in women with ovarian cancer and inoperable bowel obstruction receiving palliative care. This research addresses the decision making process around home PN, and the experiences of patients and their lay-carers of PN.
Longitudinal in-depth interviews were conducted with women with ovarian cancer and inoperable bowel obstruction receiving PN, their lay-carers and healthcare professionals. This report describes the outcome of 21 interviews. Four patients were interviewed three times, once in hospital and twice at home. Relatives of two of the women also took part in interviews. In addition, the health care professionals of these women were interviewed about involvement in the decision making processes for PN. Interviews were transcribed verbatim and analysed thematically using NVivo 10.
The decision to start PN was consultant oncologist driven with the women and other healthcare professionals having minimal input. Consultants based their decision on patients’ expected length and quality of life.
The women and their relatives discussed advantages and disadvantages of treatment. The main reported benefit for patients was increased length of survival and they expressed appreciation of having this time. PN at home allowed patients to be out of the hospital environment and be with friends and family. They also expressed the emotional comfort of knowing that they were receiving nutrition even if they could not eat. For these patients having PN was believed to be the only option as it was keeping them alive.
However, the treatment came at a cost for patients. They reported physical problems related to the PN including difficultly moving around with tubes and bags, the weight of the feed and disturbed sleep due to frequent urination. Two of the patients commented that they had not fully understood how challenging it would be for them to have PN at home. Patients also faced the significant loss of the ability to eat.
PN for patients in bowel obstruction is a controversial issue with question marks over how beneficial it is for patients. The patients in this study recognised the treatment as a life line and were grateful to receive it. However, to derive this benefit patients had to contend with problems and losses. It is important that healthcare professionals give a realistic and practical picture about the difficulties that patients will face. Also, as could be expected, not being able to eat is a major loss in patients’ lives. Nevertheless, patients are prepared to suffer these losses in order to continue living.
Longitudinal in-depth interviews were conducted with women with ovarian cancer and inoperable bowel obstruction receiving PN, their lay-carers and healthcare professionals. This report describes the outcome of 21 interviews. Four patients were interviewed three times, once in hospital and twice at home. Relatives of two of the women also took part in interviews. In addition, the health care professionals of these women were interviewed about involvement in the decision making processes for PN. Interviews were transcribed verbatim and analysed thematically using NVivo 10.
The decision to start PN was consultant oncologist driven with the women and other healthcare professionals having minimal input. Consultants based their decision on patients’ expected length and quality of life.
The women and their relatives discussed advantages and disadvantages of treatment. The main reported benefit for patients was increased length of survival and they expressed appreciation of having this time. PN at home allowed patients to be out of the hospital environment and be with friends and family. They also expressed the emotional comfort of knowing that they were receiving nutrition even if they could not eat. For these patients having PN was believed to be the only option as it was keeping them alive.
However, the treatment came at a cost for patients. They reported physical problems related to the PN including difficultly moving around with tubes and bags, the weight of the feed and disturbed sleep due to frequent urination. Two of the patients commented that they had not fully understood how challenging it would be for them to have PN at home. Patients also faced the significant loss of the ability to eat.
PN for patients in bowel obstruction is a controversial issue with question marks over how beneficial it is for patients. The patients in this study recognised the treatment as a life line and were grateful to receive it. However, to derive this benefit patients had to contend with problems and losses. It is important that healthcare professionals give a realistic and practical picture about the difficulties that patients will face. Also, as could be expected, not being able to eat is a major loss in patients’ lives. Nevertheless, patients are prepared to suffer these losses in order to continue living.
| Original language | English |
|---|---|
| Title of host publication | Clinical Nutrition ESPEN |
| Pages | 268 |
| Volume | 28 |
| Publication status | Published - Dec 2018 |
