Palliative care

There is a common misconception in Sweden that palliative care is always end-of-life care, which is completely wrong! Early palliative care focuses on prolonging life, while late palliative care is focusing on symptom relief.

Patients in early palliative care can sometimes have a very long life expectancy depending on the type of disease the patient is suffering from, for example, patients with metastatic breast cancer can sometimes live for many years on palliative treatment with anticancer drugs.

The final phase of late palliative care includes the very end of life.

Palliative care is sometimes referred to as holistic care or relief care. In the past, the term ‘terminal care’ was used to describe palliative care in the last days of a dying patient’s life, but this term has been more or less abandoned today.

In fact, there are examples of patients living as palliatives for over 20 years! But it should be recognised that this is less common.

However, it is recognised that those who receive palliative care feel better, get more help to manage their condition but most importantly LIVE LONGER compared to those who do not. So you should definitely not refuse if you are offered it.

Different palliative care elements

Palliative phase

Being in the palliative phase only means that the doctors consider that the disease is not curable. However, you can be in the palliative phase (= not curable in the long term) but be completely free of symptoms, i.e. you do not need palliative care.

Palliative interventions

When people start to need help, their needs may initially be modest, in which case a single palliative intervention (in parallel with cancer-specific treatment) is sufficient.

Palliative care

If you then have more complex needs, such as pain that needs to be controlled (with the right medication), perhaps occasional nausea that needs to be treated, fatigue, susceptibility to infections, then you need palliative care, which is also initially given in parallel with the cancer-specific treatment. But this means having access to help around the clock, every day of the week!

The division of labour

In the early palliative phase, the division of labour is usually such that the hospital handles the cancer treatments, but the palliative care service handles ‘everything else’, whether it is tests, pain and symptom management, infection management if you get infections between cures, and so on.

Then, when the cancer-specific treatment is no longer sufficient, that is, when the cures do more harm than good, the cancer doctors stop the treatment (Note – it is not the palliative care team that stops treatments, but the palliative care team takes over the main responsibility, after the hospital doctors decide to stop the treatments).

This is when the late palliative phase begins, which means that cancer treatments are no longer given, but symptoms and possible complications, such as infections, are treated. This is where there is a misunderstanding among patients who may believe that it is the palliative care that “prevents” them from receiving treatment, but it is the hospital doctors who have made the assessment that the treatments are now doing more harm than good.

Continuing to do so – because the patient or their relatives want it – may even mean shortening life, because the body can no longer cope with treatments.

In the past, all this was done in oncology because there were no palliative care units, but now there is a clear division: oncologists are experts in cures but not in treating symptoms; palliative care doctors are experts in symptom management and support.

There is a lot of help available

If you read on 1177, you can read that palliative care is treatments and support to enable you to have as active, meaningful and good life as possible despite having a life-threatening illness. All aspects of life and living matter. Here are some examples of help and support:

• You can get relief or preventive help for things like pain, nausea or fatigue.
• You can get support to manage emotions such as worry or anxiety, or deal with thoughts about life and death.
• You can get guidance so that you can organise your life with your finances or your loved ones.
• You may be provided with assistive devices that can make everyday life easier.

You can also get help from home care services if you live at home and need help with things like shopping, cooking or hygiene.

You as a carer may also need support in different ways, whether or not you are involved in the care of the person who is ill. Sometimes the whole family can get help.

Palliative care is most common in cases of metastatic cancer, as is the case with PALEMA diagnoses.

Palliative care can be started at the time of diagnosis if it is already clear at that time that you have a life-threatening disease that cannot be cured.

Palliative care can be combined with other treatments to slow down the disease. Together, these treatments can allow you to live almost as usual for months or years.

You may also be given palliative care when treatments to remove or slow down the disease have stopped working or because you no longer want such care.

It varies how much medicine you need. It may be enough to have contact with your doctor now and then. Later on, you may need palliative care in different ways most of the time.

Is the term being used carelessly?

However, it is clear that the term is sometimes used carelessly, perhaps by both the healthcare sector and the media.

In the Corona times, for example, it was reported how severely Covid-sick people in nursing homes received palliative care, which then meant morphine for the pain but nothing else until the end. This was palliative care at a very late stage.

We have also heard of patients who have been classified as palliative and then experienced that the healthcare system no longer wants to “spend time” on them because they are palliative. This is of course unacceptable, but could it be that even within the healthcare sector the term is used carelessly and sometimes interpreted as meaning that the end is near? And thus do not consider it meaningful with further care?

Läkartidningen recently wrote an article on palliative care in which they mention, among other things, that palliative care is unfortunately uneven and that access to specialised palliative care can range from offering round-the-clock care in some areas to offering only telephone support from a specialist in other places.

They also say that more training is needed for healthcare professionals in this area. Knowledge of what it is likely needs to increase.

Have you been classified as palliative?

The first thing you should do – if you haven’t already – is of course to have a proper conversation with your doctor about what stage you are at. Early or late and what the spring options are for you

Then, of course, you can also ask for a second opinion. You have a legal right to do so in Sweden and no doctor should be offended if you want to make sure that the diagnosis is completely correct. We Swedes are often a bit narrow-minded and do not want to seem rowdy, especially not to get on the wrong side of our doctor who is the one who should help us, but there we may have to think again.

Second opinion is nowadays called “new medical judgement” and you can read more here about what applies and how to go about getting it.

And if you are not satisfied with how your doctor is handling your case, change doctors. You have every right to do so!

What if you are at the final stage?

The only thing you can be absolutely sure of in this life is death, and that’s the way it is. We will all die one day. The younger and healthier you are, you think little or not at all about it, but when you get older, or get a serious illness, then of course the thoughts and concerns come. If you are also classified as palliative, it is natural that you do not feel so good. But the important thing to know is that there is help available.

The disease itself may not be something you can do anything about, but you can get help to manage your problems and symptoms, and you can get help to manage your thoughts and worries. This is part of palliative care. Make sure you get that help if you are not offered it automatically, you shouldn’t have to walk around by yourself with your worries.

How you deal with such a situation is of course very individual. Some may be quite calm and accept the whole thing, while others absolutely cannot accept the idea of the end and fight it to the full. And it is of course good to fight against an illness.

We’ve read a lot of stories from PALEMA members about how they’ve beaten the odds, fought for as yet unapproved treatments, or otherwise taken steps that have prolonged life and reduced suffering. After all, hope is the last thing that abandons us.

To accept

But sooner or later you have to accept that the end will come. As I said, it comes to us all. If you have prepared yourself – and your loved ones – then it will hopefully be less traumatic and anxious.

But of course, it’s a difficult subject and not everyone is receptive or ready to talk about it. You have to feel it yourself. But as I said – if you have a lot of thoughts and worries, it’s probably very valuable to get help from your doctor to deal with the situation. Help is, of course, available.

Webinar

We had a webinar on 25 May 2021 on this topic; “The good life â the good death; living life forward” where we discussed the topic of palliative care, what it really means, what help you can get, how to live in the best way despite your diagnosis, but also the hard part about when the end is approaching.

If you feel ready and receptive to this topic – and haven’t already done so – you can watch it afterwards on the link below. (In swedish)