‘I know everything about chemo, almost nothing about dying’

She is sometimes shocked when she raises the subject with a doctor. The nurse then cautiously says that the patient is now in such a condition that it may be time for palliative care. The doctor’s answer: “But she won’t die next week, you know.”

The nurse tells the anecdote in a room of the Mercure Hotel in Zwolle. This is the first day of the refresher course on palliative care from KWF Kankerbestrijding and Carend, a center for care in the case of incurable disease. Based on this pilot, a national course will soon be rolled out in collaboration with Amsterdam UMC.

The doctor’s remark is exemplary of the ignorance that still prevails in some circles about palliative care: it not only encompasses care in the dying phase, but already starts with the diagnosis that a patient is no longer getting better.

The other nurses nod in agreement and seem to recognize it. A woman who works in an oncology department says she sometimes hears from the doctor: ‘The patient does not yet need palliative care.’ She then asks herself: ‘Does the patient have any idea what that is?’

A nurse from another hospital says that she sometimes speaks to a patient who fears that he will not be able to handle the invasive treatment. It can then be quite scary, she says, to say to the doctor: ‘I think you should talk to the patient, because he does not want to continue treatment.’

‘As far as I’m concerned, you can take on that role much more,’ says Sander de Hosson, pulmonologist at the Wilhelmina Hospital Assen, with a lot of inspiration to the group. “That’s why we’re here today. Nurses must stand up. It’s about empowerment.’

Palliative care

For twenty years now, De Hosson has felt that we should talk more, earlier and better about death. Not just in the hospital, but in society as a whole. ‘During my education, twenty years ago, it was hardly discussed at all. And I still meet young doctors and interns who say: I know everything about chemo, but almost nothing about dying.’

It became his mission to put palliative care on the map. With the start of this course, of which he is one of the initiators, he has come a little closer to his goal. ‘We are at a tipping point,’ says De Hosson. ‘There is a hunger among doctors and nurses for more knowledge about palliative care. The courses about it are full. But we’re not there yet.’

He calls the meeting in Zwolle historic without any reservation. ‘The fact alone that the KWF has now also made palliative care one of its spearheads. The slogan used to be: cancer the world. Now there is much more attention for the reality in which many patients live: that they will no longer recover.’

Until now, KWF mainly financed research to cure cancer, a spokesperson agrees. ‘But we also realize that cancer is the number 1 cause of death in the Netherlands, with 45,000 deaths per year. In society there is more and more attention for how people die, the taboo is slowly disappearing. We are moving along with this and are now more committed to the final phase of life.’

The great hero of De Hosson is Cicely Saunders, a British doctor who is seen as a founder of palliative care. He likes to quote her saying, “You matter because you are you and you matter until the last minute. We will do everything we can to not only let you die peacefully, but also let you live until you die.”

Persistent misunderstandings

There are some persistent misunderstandings about palliative care, according to De Hosson. ‘First, the process starts with the diagnosis of an incurable disease, not with death. The grieving process has already started. It may be years before you die, but you still have to start the conversation about death. How do you want to die? But more importantly, how do you want to live? What do you expect from the remaining time?’

The patient faces a choice between two extremes, says medical ethicist Eva Asscher, who specializes in the last phase of life at Amsterdam UMC and is not involved in the course. ‘Do you want to live as long as possible? Or do you want to spend as little time as possible in the hospital? In between is a world of options. But in the end you have to make a decision: how long you will continue to treat.’

For doctors, the choice to stop treatment can be unnatural, says Asscher. ‘They have taken an oath and are used to healing, to fix. But if that’s no longer possible, what’s good? It’s an ethical dilemma, because you have to choose between two evils.’

Asscher agrees that too little attention is paid to palliative care in the current courses and that this course is therefore urgently needed. ‘Knowledge about this is also often limited among doctors in the workplace. They pay relatively little attention to it. Nurses often realize earlier that it is time for a discussion with the patient about impending death.’

‘Pointless worry’

Yet another misunderstanding: palliative care and systemic therapy (such as chemotherapy) do not have to be mutually exclusive. At best, palliative care does lead to less avoidable care. A nurse says she recently asked a doctor: ‘Why are we still treating this dying patient?’ Answer: ‘Because his family wants it.’

Never offer meaningless care, says De Hosson. ‘The guidelines on this are very clear.’

Sabine Netters, oncologist at the Isala hospital in Zwolle, shows a graph showing the chance that the treatment will work for each type of cancer and how much time you gain with it. In pancreatic cancer, the response chance is one in three and successful treatment results in an extra three months on average. ‘Is that clearly communicated to the patient?’, Netters wonders. De Hosson: ‘I’m sure not.’

The conversation about death is an essential part of palliative care. ‘That is another misunderstanding’, says De Hosson. ‘That palliative care mainly consists of sedation and euthanasia. But it is much broader. It involves a holistic view of care. In short, you look at the whole person and his environment. The next of kin must also be included in the conversation.’

The trick is to have the difficult conversation in time, says Asscher. ‘If you start asking about the wishes and expectations at the right time, it can make a big difference. Perhaps you shouldn’t broach that topic right away during the bad news conversation, because then it’s too much to handle, but soon afterwards.’

‘You explore’, says De Hosson, ‘is someone ready for this message, this subject? My experience is: people are generally able and willing to handle this very well. There is much more openness than I initially thought. It is an exception that the patient says: I don’t want to know. In that case, the conversation also becomes a lot more difficult.’

Meaning

Moreover, when death is in sight, psychosocial or meaning issues often arise, says De Hosson. ‘How do I color my existence? What has my life meant? What conversations do I still need to have to come to terms with myself? Do I have to reconcile with my family with whom I have broken up?’

He once treated a woman in end-stage COPD lung disease. ‘She had a lot of pain in her back. I was on morphine, but it didn’t do much and she had a lot of side effects. At one point I was there when a chaplain sat down next to the patient. He asked very simply and openly: how are you doing, how are you feeling?’

The patient began to cry, De Hosson recalls. ‘Within two minutes all kinds of things came to light that I had missed with my technical view of pain management. It was about a difficult relationship with her daughter. A day later I was able to taper off the morphine. There was still some pain, but much less.’

He just wants to say: a doctor who only concentrates on the physical misses a lot. The social, spiritual and psychological domains also influence the experience of pain and are all interrelated.

The emotion of caregivers

A patient once asked De Hosson: ‘If I don’t get better, will you send me away?’ Of course not, he says, another misunderstanding. He therefore no longer wants to hear the term ‘processed’. ‘I recently heard someone say on a talk show: care can’t do anything for her anymore. That is not true. We can always alleviate complaints and work on the quality of life.’

In the hall in Zwolle, De Hosson also tries to convince the participants to take good care of themselves, before taking care of someone else. ‘Self-compassion’, the PowerPoint presentation reads. He illustrates his point with a KLM video that tells you to put the oxygen mask on yourself first and then on your child.

He used to be told not to take the work ‘home’. Idiot, he thinks now. ‘Of course you tell about it at home if someone has died at your hands. Of course you will. When things like that don’t affect you anymore, it’s time to stop this work.’