2 research outputs found
Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey
Objectives Advance care planning (ACP) is
not systematically performed in Argentina or
Norway. We used the post-bereavement survey
of the ERANet-LAC International Care Of the
Dying Evaluation (CODE) project (2017–2020)
to examine the proportion of relatives who were
offered an ACP conversation, the proportion of
those not offered it who would have wanted
it and whether the outcomes differed between
those offered a conversation and those not.
Methods Relatives after cancer deaths in
hospitals answered the CODE questionnaire 6–
8weeks post bereavement, by post (Norway) or
interview (Argentina). Two additional questions
asked if the relative and patient had been invited
to a conversation about wishes for the patient’s
remaining lifetime, and, if not invited, whether
they would have wanted such a conversation.
The data were analysed using mixed-effects
ordinal regression models.
Results 276 participants (Argentina 98 and
Norway 178) responded (56% spouses, 31%
children, 68%women, age 18–80+). Fifty-
six per cent had been invited, and they had
significantly more positive perceptions about care
and support than those not invited. Sixty-eight
per cent of the participants not invited would
have wanted an invitation, and they had less
favourable perceptions about the care, especially
concerning emotional and spiritual support.
Conclusions Relatives who had been invited
to a conversation about wishes for the patient’s
remaining lifetime had more positive perceptions
about patient care and support for the relatives
in the patient’s final days of life. A majority of
the relatives who had not been invited to an ACP
conversation would have wanted it
Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries
Background. Recognized disparities in quality of end-of-life
care exist. Our aim was to assess the quality of care for patients
dying from cancer, as perceived by bereaved relatives, within
hospitals in seven European and South American countries.
Materials and Methods. A postbereavement survey was
conducted by post, interview, or via tablet in Argentina,
Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next
of kin to cancer patients were asked to complete the inter-
national version of the Care Of the Dying Evaluation (i-
CODE) questionnaire 6–8 weeks postbereavement. Pri-
mary outcomes were (a) how frequently the deceased
patient was treated with dignity and respect, and (b) how
well the family member was supported in the patient’s
last days of life.
Results. Of 1,683 potential participants, 914 i-CODE
questionnaires were completed (response rate, 54%).
Approximately 94% reported the doctors treated their fam-
ily member with dignity and respect “always” or “most of
the time”; similar responses were given about nursing staff
(94%). Additionally, 89% of participants reported they were
adequately supported; this was more likely if the patient
died on a specialist palliative care unit (odds ratio, 6.3; 95%
confidence interval, 2.3–17.8). Although 87% of participants
were told their relative was likely to die, only 63% were
informed about what to expect during the dying phase.
Conclusion. This is the first study assessing quality of care for
dying cancer patients from the bereaved relatives’ perspective
across several countries on two continents. Our findings suggest
many elements of good care were practiced but improvement in
communication with relatives of imminently dying patients is
needed. (ClinicalTrials.gov Identifier: NCT03566732)