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‘Many hands make light work’ or
‘Too many cooks spoil the broth’ ?
Achieving the tricky balance
of appropriate involvement in palliative care for advanced cancer
Porter, K., Jarrett, N., Davis, C., Addington-Hall, J., Corner, J., Duke, S., & Lathlean, J.
Background: It is known that there can be a large numbers of different people and teams involved in the care of people with
cancer (1-4), but research showing exactly who is involved in the care of people with advanced cancer has not been done before.
Twenty-four case studies were collected to learn about who is involved in the care of people with advanced cancer, from the
patient’s perspective. Social networking analysis was used to depict the patient’s perception of who has been involved in their
care within the past six months. Patients identified an average of 26 people involved in the patient’s care (‘PIPC’s) (range: 9-45).
Patient 23: living at home, waiting for
primary surgery
50
Number of
PIPCs identified
PATIENT 1: ‘I haven’t seen
[District Nurses]… Cause
they used to come on a
Thursday …And I said to
her, ‘look, I wanna go to
the daycare center’, and
she said, ‘well, how do
you feel?’, and I said, ‘I
feel fine!’ She said, ‘well,
you call me when you
need me’, and that’s how
we left it …They would
come another day if I
needed them, but I
haven’t needed anyone.’
Two patients at <1
month since diagnosis
40
30
20
10
0
Patient 12: receiving inpatient services from
Acute Hospital; being treated for two
concurrent primary cancers
24 patient participants
Two patients at <3 weeks prior to death
Patient 10: receiving inpatient care, including
monoclonal antibodies, at Acute Hospital
SPECIALIST PALLIATIVE CARE
UNIT (SPCU) COMMUNITY
PALLIATIVE CARE CLINICAL
NURSE SPECIALIST 2:
‘I asked [SPCU Physician] to
review him regarding the pain
he was having … [I referred]
the occupational therapy team
…about organising a suitable
chair for him to have… I
contacted housing… because he
was in… a private rented
accommodation and wanted to
be … under the medical council
authority housing.’
Patient 15: receiving inpatient services from
Specialist Palliative Care Unit
Conclusion: The process of making these maps with and for patients can be useful in terms of providing an opportunity for
patients to review who is involved in their care, who is a ‘key worker’, who may have been involved in the past, and who may be
involved in the future. The end result is a visual tool which may be used by both patients and PIPCs to quickly identify who is
involved and potential gaps or overlaps in service provision. The discussion involved in map-making revealed that some patients
and PIPCs are actively involved in trying to achieve the ‘appropriate balance’ of involvement in palliative care for advanced cancer.
References: 1. Dawson, S. (2007). Inter-professional working: communication, collaboration…perspiration! International Journal of Palliative Nursing, 13(26): 502-505. 2. Walshe, C., Chew-Graham, C., Todd, C., & Caress, A. (2008). What influences referrals within community palliative care services?
A qualitative study. Social Science and Medicine, 67: 137-146. 3. Smith, S.D.M., Nicol, K.M., Devereux, J., & Cornbleet, M.A. (1999). Encounters with doctors: quantity and quality. Palliative Medicine, 13: 217-223. 4. Jarrett, N. Porter, K., Addington-Hall, J., Corner, J., Davis, C., Duke, S., & Lathlean,
J. (2012). Communication pathways surrounding cancer: who is involved, how do they communicate, and how does the patient understand and contribute to this? Unpublished final report to Dimbleby Cancer Care, January 2012.
REC: 10/H0505/51 UoS RGO: 7006 SUHT R&D: RHM CAN 0729 NHS Southampton City R&D: MWP/034/10 Southern Health NHS Foundation Trust R&D: SHT013 UKCRN: 8979