Palliative care: Hope Alexander

Transcript

What is palliative care? What does it involve?

Palliative care is still part of the health and medical activity: specialists, doctors and nurses and carers. It’s a specialty of medicine nowadays and we’re very lucky that in Western Australia we have very good palliative care.

It’s taking care of a person at the end of their life. Usually when people go into palliative care they don’t come home again, or they don’t go back to hospital. It’s reserved for the last stages. It could be weeks or it could be a month or 2, and even in public hospitals now. When my friend passed away he had palliative care in the public hospital and I will say that it was excellent, it was like the gold standards so no one has to be worried if you’re in a public hospital here in Perth.

People think that a person in palliative care is going to be doped up with morphine, which is what they say, but it’s actually a combination of drugs and medication to keep the patient free of pain and comfortable. In my friend’s case, because of his lungs he was always coughing, so one of them was a cough suppressant to reduce the coughing and keep him calm because they had to keep putting the oxygen, he was on oxygen 24/7. Some of it was anti-nausea because sometimes at the end of life patients experience nausea, part of the body’s shutting down. There’s pain, which can be controlled and things are taken care of.

Food is offered to them but if they decline that’s fine, no one is forcing them. Water is offered and also they have these sticks to put in their mouth and keep their mouth moist, as a dry mouth is one of the effects. They do the oral hygiene for people and generally anything else a person wants, which is usually just to have my family and my best friends with me, and to have a conversation, have a laugh. The family can eat and drink and make merry as it were, and the patients are sitting in bed being the centre of attention. And also the patient has the right to tell them to leave the room if they’ve had enough and they’re tired, you know, “Please leave me,” and to see perhaps one person at a time.

The palliative care people come and discuss with the patient what is going to happen, what they’re going to do and the drugs or medication that they’re going to be on and also to make sure to ring the bell if the patient feels uncomfortable or worried or anxious to ring, because they mostly have a special nurse to come to attend to them within a minute or 2. So they’re not left alone to worry and be anxious and that’s a tremendous comfort to a person. Sometimes a person is put in a room on their own so they’ve got the privacy to be with their family. I think it’s a great idea.

Who should I contact for more information or to arrange palliative care?

Palliative care is part of the WA Health Department. Silver Chain does palliative care in one’s own home and Cancer Council offers palliative care, too. So they’re the people, you can ring up. And also, before your loved one needs palliative care it’s a good idea to ring up, and ask and talk to them, have a conversation to find out what’s involved.

GPs can help you arrange palliative care but you have to let people know that this was going to be required and a doctor will give you an indication of when perhaps it may be, and often people choose now to die in their own home. It can be done, it can be done successfully and Silver Chain nurses will call regularly and even at night if you need them they will come and tend to things. And also overnight, if a person passes away the nurses are a 24/7 thing, they will come to the family if need be.

What does having a good death mean? What important information should be written down?

I come from the old Anglo-Saxon background and “a good death” was, I think from the Irish, they used to have the person pass away in the home, often in England too, in the UK, a person would pass away in the home with their family around them, even the young ones, the babies, everyone was there. And then when the person passed away of course they had the wake when everyone drank to their health or whatever and had a good time.

But the good death means you do it in your own way, in your own time, and that’s something important that we can do too. If we want to have a funeral service or if we want to decide how things will be if we’re having a service we can write down the music, who we’d especially like invited, who we might want to conduct it or maybe who we don’t want to have there, and also the music. And in a person’s end of life, the person might choose their own CDs that they’d like to have.

More information on Hope Alexander

I originally trained as a primary school teacher and my interests are in English and also in effective communication. Then, when I was having chemotherapy, I did a masters in Public Health. I’ve actually got about 6 tertiary qualifications but I’m not medically trained. However my masters in Public Health gave me a good background.

I’ve been a Health Consumer Representative for many years and also an advocate for people who have no voice, for people who their English might not be as good as it could be or they’re ill or distressed or all of the above. And I feel I can help in some way giving back to the community.

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