Interview results
GPs’ views on the start of palliative care
GPs mainly associate palliative care with a relatively circumscribed period of a few weeks or months in which incurably ill people need a great deal of physical, psychosocial and spiritual care. Some GPs add that they realize palliative care may start years before death in the case of certain chronic diseases such as COPD or heart failure. However, the immediate association is still with a limited period at the end of life in which the patients (and often their close relatives) make increasing demands on the GP, care needs become more intensive, and contacts become more frequent.
(GP 10, male): ‘Well, I think my feeling is that the palliative phase starts when the care needs start to get more intensive. So when you notice that contact isn’t just once every three months… just asking hey, how’s it going, if that shifts to more intensive care, where your help is demanded on a more regular basis or where you feel perhaps I should pop in more often to keep an eye on things, to my mind that is a kind of start to the palliative phase.’
While GPs do see palliative care as more than just terminal care, and some are clearly familiar with Lynn and Adamson’s model (see introduction), that is not sufficient reason for them to start using the term palliative care right from the moment of diagnosis. Nevertheless, GPs do see the diagnosis phase as an important phase, and they offer support to the patient and relatives to cope with the diagnosis. However, GPs feel there is little to be gained from seeing this as the start of palliative care, especially as many people with cancer, for example, will eventually recover. Patients are often not yet dependent on healthcare in the early stage of a life-threatening disease, and in such situations GPs feel it does not make sense to talk of ‘palliative care’.
(GP 19, female) ‘Well yes… if it really is about people with COPD or people with heart failure and so on - and I think these are mainly the people we are talking about, or people with muscular conditions - even though you know someone is eventually going to die from this there is a long period before dying, you can say it’s really a chronic disease. You know they will eventually die from it. I find it difficult to say whether you should call that entire period palliative care. Well… as I said, well we discussed it earlier when I said that I’m not thinking about that, I don’t start offering different care because it’s suddenly called palliative care or chronic care. Because you always try just to make things as comfortable as possible for the patient. So perhaps the label applied to it is just not so important. That's my feeling… why should you call it that?’
It is often not the diagnosis but a combination of generally subtle signals that prompts GPs to consider palliative care needs. These signs come initially from the patient, frequently in combination with reports by other care professionals and close relatives. We explain the different signs below.
Subtle signals given by patient
Changes in self-care abilities and care dependency
The recognition of a need for palliative care is often a gradual process steered by a combination of signals. One key signal is a reduction in a patient’s self-care ability, in the sense that it costs a patient an increasing amount of effort to look after himself. Often, a patient also becomes increasingly bedridden and dependent on care by relatives and professionals. The care needs addressed to the GP also become more frequent and more intense. A patient who always used to come to the GP practice may suddenly request a home visit. Two GPs describe increasing healthcare demands in the interview excerpts below.
(GP 3, male): ‘It starts when the care need increases.’
Interviewer: ‘Could you explain that?’ ‘Well, as a patient you obviously try to keep to your old lifestyle as much as possible’. And if you have to give that up and ask for help because you can no longer manage to eat or sleep or because of the pain, that is the point when you can give a patient support.’
(GP 1, female): ‘Yes, there are different kinds of palliative care. And the real palliative care is the final stage as it were, because then more care is needed from the people around them or from outside. And if someone becomes progressively dependent on others. I think that this… is so for various activities of daily living, that they can no longer do themselves.’
Not recuperating
Not recuperating fully after an additional condition, such as bladder infection, is also a signal for GPs that they need to monitor this patient particularly closely. Normally people should be back to normal, but the anticipated recovery never happens or is only partial, and this is a signal for GPs that their patients are ‘sliding’ into the palliative phase.
(GP 4, female): ‘These are people who sometimes don’t recuperate after a particular condition as you expect - hey, I treated that bladder inflammation and… so it is partly a case of expectations and knowing that if I treat that condition they should recuperate after a certain period. Then someone should be back to normal, but look, they’re not. And that’s often the start.’
Social changes
Social changes are also a signal for GPs that there is a need for palliative care, for example if people become withdrawn, less focused on contacts beyond their close relatives and no longer get pleasure from hobbies or going out. Life becomes more ‘existential’ in the sense that they concentrate on the people and things that are most important to them, and focus on closure and taking leave of life.
Signals from close relatives
GPs also often get signals from close relatives. A partner or other close family member will often report deterioration in the patient’s situation or say that the burden of care is becoming very heavy and that they need to discuss matters.
(GP 9, male): ‘Yes, or the family carers for example. They may well be the biggest source. You see the family carer, who often ends up dealing with most of the demands for help and care, and they say, well, I’m finding it a bit too much, I’m finding the going too tough, I need someone I can discuss things with now and then. And you see the family carers are often just as pleased with a GP who visits regularly as the patients themselves are. So they also play an important part.’
Reports by other professionals
Another signal for GPs that a patient may require palliative care is a message from the medical specialist that cure is not, or no longer, a possibility. This is also the point at which the medical specialist refers the patient back to their GP, who once again becomes the primary treating physician.
Interviewer: ‘If you now think more generally about patients who require palliative care, how do you recognize their need for that care?’
(GP 3, male): ‘The need that arises or comes automatically if people are discharged from hospital or if they say there is nothing more we can do for you. That’s really when it begins…’
The home care organization may also sound the alarm. For instance, the district nurse may phone the GP to say there are problems with the patient, the family is overburdened and something needs to be done. A signal like that in combination with other signals alerts a GP and makes them feel there is a need for palliative care.
Differences in recognition of palliative needs for different conditions
GPs mention differences in the recognition of a need for palliative care depending on the conditions people are suffering from.
There is often a relatively clear demarcation between the curative and palliative phases for cancer patients, as a medical specialist will say curative treatment is no longer possible.
An additional factor is that the diagnosis of cancer is often experienced as a ‘bombshell' by the patient, their close relatives and sometimes even the GP. Even if GPs feel that palliative care does not automatically start with the diagnosis, in the case of cancer everyone is aware of the real chance that the patient will die. As a result, the option of palliative care is on top of mind at an earlier stage than is the case for many chronic diseases.
(GP 10, male): ‘Usually it’s the case that as soon as they have had the diagnosis, people start to think this could well mean I die and I am still so young. Or fine, I’ve had a good life, I have to die of something… but at any rate they’ll be aware they might die when they get the diagnosis. So that’s a totally different process. So I feel these people often… of course they sometimes also get the shock of seeming to have completely recovered and then they collapse again. But of course often people… the attempts at a cure don’t work out and they gradually get reconciled to the idea. And then it’s a very clear process, then they are thinking about it. And for you as a doctor… these are very intensive things… but I do think there is a certain clarity.’
GPs explain that it is often more difficult to predict how other chronic, ultimately terminal conditions will progress compared with cancer. People with COPD, heart failure or Parkinsonism are often still being treated by a medical specialist in the final stages. They do not have a clear point where the medical specialist says there are no more treatment options. In the excerpt below, a GP explains how he often gradually becomes aware of a need for palliative care.
(GP 9, male): ‘Well, as I said, it is relatively somewhat easier with cancer patients because then you often get a message from the hospital that the curative treatment has failed, so then you know that from that moment on these people are officially palliative. Although certainly at first we often don’t get that involved. And in the case of COPD or heart failure and so on it’s more of a question of noticing at a particular point, well, we seem to be doing palliative things, without it being an explicit decision, but more that you… yes, there comes a point where the policy gradually changes… and there comes a point when you realize, yes, we really are giving palliative care.’
GP also frequently have the feeling with very old people that the patients often shift slowly and gradually to ‘a palliative process’. They describe this as a natural development, the ‘circle of life’. A GP explains:
(GP 8, male): ‘But after they get to 85 or so, lots of people are finished with life, or no longer see it as a real… yes, as a diversion that they are going to die or that it is coming to an end. They're finished with life, so dying is a very natural thing. And then you don’t have so much of an explicit feeling of now we are going to opt for palliative care.’