There is a well-developed range of palliative care, but this is still too often only used when it is clear that there is no longer any cure and that someone has only a short life left. This must change, states the Council for Public Health and Society in its advice on a broader approach to palliative care. Councilor Ageeth Ouwehand explains.
The subject of palliative care has not been complaining about attention lately. “However, when using the term, one must be careful not to confuse tongues,” says Ouwehand, “because we see that this is often the case. Are we talking about palliative care or palliative terminal care, there is quite a difference. In the latter case death is in sight, in the former it concerns care for someone for whom it is clear that care can no longer offer a cure. But such a person can live a very long time. Our advice is aimed at care providers who are not in the palliative field, but who do deal with people for whom it is not clear whether they are palliative. We argue that the dichotomy that exists between being sick on the one hand and no longer being able to get better on the other, must be lifted, because in practice the separation is not so black and white.”
In healthcare practice, this means that the patient should be asked earlier: ‘We don’t really know how you will fare from here, but what do you think is still important at this stage of your life?’ “It is a question that all healthcare professionals can ask,” says Ouwehand.
no cut
That happens too little. “When the palliative phase begins, people suddenly speak from a much more holistic view of humanity than is the case in the treatment phase,” says Ouwehand. “In addition, volunteers suddenly come into the picture, for example. But when people are chronically ill, it is not at all a foregone conclusion that people talk about quality of life and that the question ‘What do you still want from life?’ is being asked.”
What often happens, she says, is that someone is diagnosed with a stage IV brain tumor, accompanied by the message from the attending physician: ‘We can’t do anything for you anymore, I’ll refer you to the doctor’. “Like there’s a cut,” she says. “There shouldn’t be one, it is important that the broad approach to the concept of palliative care is discussed much earlier in the process. The GP and the district nurse have a very important role in this. It is part of their profession to ensure that people find their way in the home situation in such a case. They know the social map and can therefore do this.”
One other way
The point, Ouwehand argues, is that practitioner and patient will not get around to the essential questions as long as the medical-technical approach to the disease remains paramount. “If space is taken earlier in the process to bring up the broader perspective, the patient may just choose to take a completely different path,” she says. “This could also be the path of forgoing further treatment and opting for other things that put quality of life first.”
The practitioner does not have to be the one acting on that broader perspective, but can offer an opening and show the patient the way. “The hospital is efficiently set up,” she says. “The question about the broader perspective can be asked, but walking the path that becomes available is more outside the hospital walls. Within the hospital, there is a pre-eminent role for the nurse specialist, who is much more involved in the life domains than the attending physician. It depends a bit on how the partnership is set up whether the nurse specialist has the full scope for this, but it is important that you make a joint intention to offer space for the broader view of palliative care. It should not depend on the nurse practitioner.”
Different mindset
What is the patient’s role in this story? Should he take the lead in asking whether his position can be looked at from a broader perspective? “We already see mature patients doing this,” says Ouwehand. “But it works psychologically in such a way that you have to be in good hands to bring it up in the situation of a serious illness. Almost every patient will initially want a treatment that can be life-saving. As a result, the real conversation usually only takes place when it is clear that healing is no longer possible. Then you often hear patients say: ‘We should have had this conversation earlier’. But that didn’t happen because the patient ended up on a rollercoaster of research and treatment in that earlier phase.”
Changing the mindset of professionals is not easy, Ouwehand acknowledges. “The palliative field is now fragmented, from super specialized to volunteers,” she says. “And we know: if something becomes a specialism, it is also left to that specialist. But of course you don’t have to. Every medic and paramedic has had the communication skills in his training. It’s about the awareness that you are all responsible for it. Of course, the conversations must be facilitated and funded. That requires ‘viewing and listening fees’, on which we have also issued advice.”
Talk about it
There is another RVS advice that is related to this topic, namely the advice Mortals – coexisting well with death. “We’re also talking about that here,” says Ouwehand. “The idea of malleability ensures that we no longer talk about dying and death. But not talking about it doesn’t mean it doesn’t exist.”
‘Talk about it’ in this context does not mean one conversation. The question of what someone who is (probably) no longer gets better can change over time. “It’s continuous scanning,” says Ouwehand. “Not necessarily a matter for professionals, of course. If the patient and their relatives can do it themselves, it is fine. And volunteers and fellow sufferers can also play a valuable role. Don’t limit it to healthcare. But care must – and at an earlier stage than is often the case – provide the first impetus. And the healthcare professionals must also keep a line open afterwards.”
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