Table 2 Strategies suggested by participants to support integration of genetics into palliative care.

Provide enough time and opportunity for patients and their families to consider whether genetic testing is right for them

I think it should [be] over multiple bites at the cherry. You know, just introduce the concept or explore the concept and then allow time to pass and answer questions as appropriate (P24)

Consider having a specialised or embedded genetic counsellor available for the palliative care service

I think that it’s quite important for genetic counsellors to have areas they specialise in, where professionals can call on them for advice. Because I think in a palliative care setting, you almost don’t need a physician because the diagnosis has been done (P20)

Encourage a palliative care health professional to champion genetics from the inside

You need […] somebody in palliative care who thinks it’s important […] and it’s not just got to be a doctor, it’s got to be the nurses. You really need somebody in nursing, who thinks it’s important (P26)

Encourage genetic and palliative care health professionals to attend the same multidisciplinary team (MDT) meetings

I think MDT meetings are the easiest way to integrate us in. Because I don’t think every department has the resources to have a genetic counsellor on staff, but the MDTs are an excellent opportunity to […] build the contacts to be able to have those discussions with each other (P5)

Liaise directly with palliative care health professionals who are involved in the patient’s care when a referral is received

Once I have spoken to the nurses or the physicians who are actually involved with that patient’s palliative care planning, they have been extremely helpful […] in terms of organising and carrying out a more satisfactory consultation for this family (P4)

Screen patients on admission to palliative care or hospice with a checklist, family history questionnaire, red flag document or digital application.

I would have thought some sort of triaged model with red flags, […] check around any questions about family risks, and maybe you’d even […] tailor it to the fact that people have children. That’s more likely to be at the front of their mind than if they don’t (P23)

Provide written material about genetics to patients and their families

What I would like to see is […] a sort of pack that both for […] doctors and for families around when family members are dying, that kind of almost raises some of those questions by default and then families can pick and choose (P17)

Ask patient and their family if they have any unmet need related to genetics

Maybe just checking with the patient […] “So have you been referred to genetics?”, “Has someone raised this with you that it could be hereditary?” [or] “OK, I can potentially be that liaison person, check in with genetics”. Because some people do forget that they’ve had anything through us (P13)

Consider reoffering the opportunity to palliative patients and families to discuss genetics

In that case […] we’d seen her previously and […] she either declined testing or hadn’t gotten around to having the blood taken and then realised the clock was ticking. And so desperately wanted to have the blood taken (P5)

Generate leadership by reflecting the value of genetics in relevant policy and/or guidelines

I think it would help if there was a national strategy on the integration of genomics into palliative care. […] I think it is quite important that you do have some sort of national leadership (P25)

Use telehealth services for patients receiving palliative care

One of the biggest barriers is that they’re too unwell, or that it’s just adding a burden to their appointments, so being able to stay at home […] in general I would say it’s probably been really positive for patients in general, but probably palliative care in particular (P13)

Improve capability of electronic medical records to share information between services

So how do they get access to medical records that sometimes might span over years? […] there’s a suggestion: electronic records that actually talk to each other. […] You can take a considerable amount of time to wade through health records to see if genetics has already been covered (P24)