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Table 5 Late end of life discussions and SPC referrals

From: Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study

Difficult discussions and having the skills/confidence to initiate them
‘“this chemotherapy has done nothing for you, and actually you are dying”, that must be a really difficult conversation to have…so I think that conversation is sometimes put off’ (SPC nurse 11)
‘I think the [haematology] consultants struggle sometimes…you don’t want to feel you are giving up on them [patients] some are better than others in having discussions with patients’ (SPC nurse 14)
‘if those conversations haven’t been had… then you can’t even begin to start to have the next conversations about preparing for dying’ (SPC nurse 4)
‘with a lot of haematological malignancies a percentage of people can be cured…so [end of life care is] not necessarily something you want to ask at the very beginning when you’re embarking on what might be curative treatment, so it’s quite difficult picking the right time to have those conversations’ (SPC doctor 2)
Timing of SPC referral
‘the acute leukaemias… it’s [referral] very, very end stage, once the marrow is completely failed…the ones we get nearest to are the people with myeloma, where they tend to have lots of bone we tend to get involved a bit earlier there…’ (SPC doctor 1)
‘by the time [of] the referral, he was imminently dying…that is really, really difficult for us because you don’t have time to build up a relationship, that trust… you often get involved in the very, very end stage. If we could get earlier [referral], build those relationships up so we can explain to patients and their families that we are able to support people at home, to put packages of care to support them, so that they build trust, so they know what contact numbers [to ring], so they don’t have to ring the haematology ward’ (SPC nurse 1)
Patient reluctance to engage in conversations about end of life
‘some haematology patients choose not to know there is no more treatment that they can have… they make a choice not to have this conversation’ (SPC nurse 11)