Portugal's Strategic Plan for Palliative Care rests on four axes: organisation and integration of care, patient-centred care, training, and quality. Read like that, it looks like the list any plan would have. The second axis deserves attention, because it is the hardest to audit and the easiest to invoke.
"Patient-centred" is a worn phrase
Everyone says their care is patient-centred. Nobody writes in a plan that theirs is institution-centred.
The difference shows up in the detail: who decides what happens on Thursday afternoon. If the answer is "it depends what the patient wants, and we know because we asked and wrote it down", the axis is alive. If it is "we have activities scheduled", the axis is a heading.
In palliative care this weighs more than anywhere else, for a simple reason: the time available is short and known. An afternoon spent badly is not recovered next week.
What is hard to organise
The National Network for Integrated Continuing Care has convalescence units, medium-stay and rehabilitation units, long-stay units and home care teams. Palliative care cuts across all of it, and that is where integration gets expensive: the person moves, the team changes, and what was known about them — what settles them, what irritates them, what they want and what they have already said they do not want — is often left behind.
A transferred patient arrives with the right medication and without the story of who they are. The first travels in the file; the second travels in the head of whoever stayed behind.
Equipment does not solve this. Records do — the same argument we made in the session and the patient's clinical file.
Where an immersive session fits, and where it does not
In palliative care, RVer is used to offer meaningful experiences: returning to a place the person knows, seeing somewhere they always wanted to see, being in an environment they recognise. The session is short, it is accompanied, and it stops whenever the person wants.
What it is not: it is not treatment, it is not symptom control, and it neither replaces nor alters any part of the therapeutic plan. Whether it makes sense — and when it does not — is decided by the team following the patient.
One question comes up often and deserves an honest answer: is it worth it with a patient who no longer communicates? We wrote about that in a patient who no longer communicates: is a session worth it?. The short answer is that the decision belongs to the team and the family, and that the absence of a verbal response is not, on its own, a criterion.
The family, who are also in the plan
The plan speaks of patient and family. In a unit, the family is there. At home, or 300 kilometres away, they are not.
That is why the family call exists in the system: someone who cannot be present sees what their person is seeing, and talks to them. It is not a clinical feature and is not presented as one. It is a way of shortening a distance that, at that moment, costs more than at any other.
Two questions for a team
- What do we know about this person that is written nowhere? If the answer is "a lot", the next shift starts from zero.
- Who asks, and when? "Patient-centred" without a scheduled moment to ask is an intention.
Sources: Strategic Plan for Palliative Care, Executive Board of the Portuguese NHS; National Network for Integrated Continuing Care.