Five misconceptions about palliative care

Rachel works with MSF teams as a mobile support technician to improve the quality of patients’ care.

1. That it means stopping active care

REALITY: 
One of the biggest misconceptions is that we're abandoning patients or stopping treatments that should continue. I spend a lot of time helping people understand that what we do is adapt care to the patient’s condition and their priorities: we're never stopping treatments that might benefit them. That's very clear.

People sometimes think that palliative care and euthanasia are similar but they're not at all the same thing. Curative and palliative treatment aren’t opposites and can in many cases work alongside each other.

2. That it’s only for older people

REALITY: 
People are surprised to learn that I work with newborns and small children because palliative care is often thought of as something for older adults or people with cancer.

The idea that children and babies might need palliative care can make people feel surprised and sad. They might assume that doing this work all the time must be really depressing. It is often very sad, but it can also be rewarding to support staff in providing this care to children and their families.

Unfortunately, death is unavoidable in our projects. So whether or not we call it palliative care, our staff are caring for people at the end of life. But by supporting staff, we can transform something that is always going to be painful into something that is also, in many cases, a validating experience.

In my work with a neonatal team in Burkina Faso, communication with families was crucial. I’ve seen how colleagues have been able to build trust with families, which means that even when the outcome is difficult, the family still appreciated that they were kept well-informed and trusted that we did as much as we could.

Many of my colleagues have said that it’s transformed how they do medicine. In the past, if they had difficult news to share, it could often be a moment of conflict between the medical team and the family. Now, I know doctors and nurses who have kept in touch with the family months later, even when the child didn’t survive. By communicating more openly, they're able to build strong, trusting relationships.

3. That humanitarian medicine is only about saving lives

REALITY:
We have a moral obligation to our patients to provide them with care even if we can't save their lives.

As a humanitarian organisation we talk a lot about saving lives, relieving suffering and promoting the dignity of our patients. If we focus only on the life-saving, we're forgetting this other part of what's important to us.

4. That it’s just something people think about in the global North

REALITY: 
There can be a tendency to think that palliative care is an idea that was developed in the global North and then disseminated across the world.

In fact, it’s important to remember that in all cultures and places, people have ways of coping with loss and caring for people who are seriously ill or who are at the end of life. Good palliative care helps to build on those strengths.

Some of these ways of coping can be disrupted during a humanitarian crisis because of conflict or natural disaster. That’s why it’s so important to recognise what people already do and support that.

5. That morphine and opioids can’t be used safely

REALITY:
In Canada we have a big problem with opioid addiction and misuse, so I understand why people have fears around these drugs. But with proper controls in place, we can safely make these medications available for the patients who really need them.

For some doctors and nurses with MSF who have very little exposure, they might feel that it’s very risky to prescribe these drugs and that they're always going to have major side effects.

In a way it’s a perception issue, but this often changes when staff gain more experience and confidence in comfort care and understand how and when to use this kind of pain management.

In addition, sometimes people think that palliative care is limited to pain management, when really, it’s a holistic, patient-centred approach that addresses psychological, emotional, social, and spiritual suffering.