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Caring for the Family: How palliative care changes the language of treatment

Mette Raunkiær is a senior researcher in Videncenter for Rehabilitering og Palliation (REHPA), or The Danish Knowledge Centre for Rehabilitation and Palliative Care. She works in community palliative care, and home care, as well as palliative care for children and their families. She also manages a network for community-centred palliative care professionals.

This interview took place on the 3rd of March, 2018.

“I have been interested in palliative care since my education as a nurse. I was working with people who had cancer, and also in home care. At that time, I thought it was very important to help people with those kinds of diseases. At the times when they were doing well, and also when they were going to die from those diseases. From that time, a long time ago, 1986 I think, my interest in palliative care was born. And back then, the terminology was different, in a way. When I was educated, it was called ‘care for dying people.’

Here in Denmark, you can see that palliative care was born from the field of oncology. In the early 80s, there was a lot of key persons who were interested in palliative care — a lot of people in the cancer society. But today, the perspective is broader, and considers many kinds of diseases. In the last five years or so, we have started to talk about palliative care for children more, for example. We also started the first Danish hospice for children in 2015, in the Western part of Denmark.”

“When an ill person is at home, or at a nursing home, it is very important for them to feel that their everyday life continues as normally as possible. They need their routines and friends and networks around. And, when they begin to evidence more symptoms, or experience negative turns in their illness, they need more support. As a nurse, you have to be very mindful of those times when they are shaken. At that time you have to be very observant, you have to pay attention to what’s happening for the person. You must help help them extra as a home nurse or as a GP.

I think palliative care is a very important field to work with. You support people when they are in a hard part of their life. You are present during a very important chapter of life. For example, it’s very important to help families have children, during birth, and it’s equally important to take care of the family when one is going to die.”

“People should know that receiving palliative care doesn’t mean you will die soon. Often people connect palliative care and hospice with death. Sometimes you can have palliative care needs for a long time during an illness trajectory. There are often two paths to distinguish in terms of life-threatening illness: palliative care or rehabilitation. These two approaches have different goals. Rehabilitation is for when you have a specific amount of time and a goal, and momentum towards it. Palliative care is specifically for diminishing pain. It doesn’t necessarily mean you’re going to die. Palliative care is a kind of approach to help families. What exactly can palliative care offer a person? Sometimes, it can go beyond just alleviation physical symptoms. It can help with social or psychological problems, too.”

“When a person has a life threatening disease, and he or she has a need for palliative care, the relatives they are often very exhausted. It’s very difficult to cope with the illness of a family member. For this reason, it’s very important that palliative professionals care for the whole family, not just the individual. But, it can also be hard for professionals to take care of the family as a whole. Because, contrary to the traditional model in medicine, you’re not talking about “patients” and “relatives.” You have a dichotomy in that kind of language – whereas “family” is a more holistic term. And language creates reality in some way. So I think it’s important to think about how are you, as a care-provider, talking about families? Are you talking about patients and relatives, or are you using the word family? How you talk creates the way you are going to see the people you treat.”