Abstract
Background/aims: Preserving dignity is important in hospice care. It is
never explicitly described how this is performed in daily practice. Insight
into dignity related distress, support a practical approach of dignity conserving care in hospices.
Aim: To study dignity related distress in hospice patients.
Methods: A cross sectional quantitative design using structured interviews was performed with patients admitted to hospices in the
Netherlands from XX to XX. All hospices participating in the HOPEVOL
project were invited to participate. Patients admitted to hospice were
eligible if they were >18 and able communicate in Dutch or English. All
eligible patients were invited to participate. Main outcome was dignity
related distress, assessed by means of the Patient Dignity Inventory
(PDI). Data analysis was performed with descriptive statistics.
Results: In total 45/51 hospices responded to the invitation, median 2
patients per hospice were enrolled. Structured interviews took 10-30
minutes.
93 patients participated; median age 80; 57% women; 50% without
active stated philosophy of life and 80% diagnosed with cancer and an
estimated life expectancy < 3 months.
Three items of the PDI were experienced by >70% of patients: inability
to continue with usual routines 77(83%), physically distressing symptoms n=67/72% and inability to carry out tasks associated with daily living n=66/71%.
Five most distressing sources, experienced by >40% patients were:
reduced privacy 60%, no control over my life 59%, feeling no longer who
I was 52%, inability to attend bodily functions independently 51% and
not being able to continue usual routines 48%.
Conclusions: Besides physical symptoms and loss of function, loss of privacy, autonomy, identity, attend bodily functions, and usual routines are
sources of distress that affect dignity most and are common in hospice
care. Hospice teams could ensure dignity conserving care by structural
and explicit attention to specific sources of distress.
never explicitly described how this is performed in daily practice. Insight
into dignity related distress, support a practical approach of dignity conserving care in hospices.
Aim: To study dignity related distress in hospice patients.
Methods: A cross sectional quantitative design using structured interviews was performed with patients admitted to hospices in the
Netherlands from XX to XX. All hospices participating in the HOPEVOL
project were invited to participate. Patients admitted to hospice were
eligible if they were >18 and able communicate in Dutch or English. All
eligible patients were invited to participate. Main outcome was dignity
related distress, assessed by means of the Patient Dignity Inventory
(PDI). Data analysis was performed with descriptive statistics.
Results: In total 45/51 hospices responded to the invitation, median 2
patients per hospice were enrolled. Structured interviews took 10-30
minutes.
93 patients participated; median age 80; 57% women; 50% without
active stated philosophy of life and 80% diagnosed with cancer and an
estimated life expectancy < 3 months.
Three items of the PDI were experienced by >70% of patients: inability
to continue with usual routines 77(83%), physically distressing symptoms n=67/72% and inability to carry out tasks associated with daily living n=66/71%.
Five most distressing sources, experienced by >40% patients were:
reduced privacy 60%, no control over my life 59%, feeling no longer who
I was 52%, inability to attend bodily functions independently 51% and
not being able to continue usual routines 48%.
Conclusions: Besides physical symptoms and loss of function, loss of privacy, autonomy, identity, attend bodily functions, and usual routines are
sources of distress that affect dignity most and are common in hospice
care. Hospice teams could ensure dignity conserving care by structural
and explicit attention to specific sources of distress.
| Original language | English |
|---|---|
| Pages (from-to) | 164 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | S1 |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |
| Event | European Association of Palliative Care World Congress - De Doelen, Rotterdam, Netherlands Duration: 15 Jun 2023 → 17 Jun 2023 |