My conversation stopping career choice

‘So, what do you do?’.  Here we go, I think. I proceed to explain that I am a palliative care doctor. I work mostly with children, but some adults facing serious illness, supporting their physical, emotional and spiritual needs and often end of life care.

This is the moment the conversation gets really awkward.

Cocking their head to the side they say, ‘I don’t know how you do what you do. You must be so special. An angel.’

Well, ‘thank you’ I say. When in truth I am thinking. Nope, no angel here. Just someone willing to talk about topics others find uncomfortable or difficult. I am prepared to have those conversations that the vast majority hope they will never have to.

And yet when it comes down to serious and possibly life ending illness, wouldn’t it be comforting to have someone empathetically tell the truth? Someone to sit and slowly listen to what really worries you? Help you navigate your thoughts when you are wrestling with decisions about whether to continue treatment or spend what may be your last Christmas or Eid surrounded by loved ones at home?

And when the time comes to let go, to have someone alongside that journey. Answering questions such as; what to expect, what will it look like, how will we know, what do we do when we think she has died, who do we call?

Someone who can answer you honestly and tell you what is normal, when nothing in your life is normal. Someone who understands that in the dying phase a child does not need fluids or food; that there is a natural metabolic process occurring which means the less we interfere the better. Someone who can give permission to the family to provide only the care that maintains comfort. Even if your loved one has stopped eating, they do not starve to death.

Someone to reassure you that it is normal for the dying to have visions of the person coming to fetch them. And that often it is a deceased loved one. And it is not usually scary.

Someone to ask you if you have given the dying permission to go. And that you will be fine as much as you will miss them and never forget.

Havelock Ellis, a very clever physician in the early 1900’s said “Pain and death are part of life. To reject them is to reject life itself.” More than 120 years later we are still pretending it is not an important conversation.

If you know someone facing serious illness, ask for palliative care. Demand palliative care! Don’t wait until the suffering is so much and the confusion is overwhelming. Patients who receive earlier palliative care have greater quality of life and live longer. Palliative care is not giving up. It is embracing your situation and managing it actively so that you can be in control as long as possible and not the passive participant in your health and disease journey.

Many doctors and nurses, don’t know all of this. They haven’t allowed themselves to go there either. It’s not what we do. We save lives. In reality, we can only save some lives and only for so long.

Umduduzi means ‘the Comforter’ in Isizulu. As a donor funded NPO we provide palliative care to children with life-threatening and life-limiting illnesses in KZN, South Africa. Click here to support our work.