CareSearch Blog: Palliative Perspectives
Dealing with Dying – Some Comments for Carers
A guest blog post by Meg Brassil, Consumer Representative
Most of us, when we undertake to care for someone who’s dying, don’t have another person to talk it over with. After my son died of leukaemia at home, other people I knew asked me about my experience and involved me in theirs. It made me think quite a bit about what it means to achieve a good dying. Hopefully these thoughts might be useful to others.
Understanding what is involved with the dying of a family member or a close friend or neighbour isn’t a straightforward thing. You can’t assume one experience of dying is the same as another. Most importantly, you can’t necessarily control what and when things happen.
There is no formula for dying. There is no exact timeline. No-one can predict exactly what symptoms the dying person may experience, what their severity might be or what kind of response to various medications the person dying might have. Above all, no-one can predict how the person who is dying will cope. Even that will probably vary from day to day.
If you want to be involved AND be useful then my advice is to make plans where you can, be prepared as much as you can BUT be prepared to be flexible.
The first thing to think about is what’s the purpose here? To help make this person’s dying a good dying is my guess but simply wanting it doesn’t make it happen.
In very simple terms I think all of us would like a good dying, i.e. to be NOT in pain and to be with people we love and who care for us.
No dying is symptom free. Include that fact in your expectations of what you (and clearly, the person who’s dying) have to deal with. A good dying is one where when symptoms arise (such as pain, nausea, vomiting, diarrhoea, constipation, delirium or breathlessness) they are dealt with as promptly and effectively as possible so that the discomfort or distress of the dying person is minimised.
If you yourself are prepared for the fact that the dying person will have times of discomfort or pain you can focus on sorting out the best solution at the time rather than being emotionally upset about it yourself. A major part of your role is to be a calming influence for the dying person. It doesn’t help anyone if you take on their distress yourself. Making sure you have time out to regroup yourself is also a necessary thing if you want to stay the distance and be helpful.
Before you make any fixed decisions about how things will happen, ask yourself some of the following questions.
1.Does the patient know they will die soon?
Have any medical/nursing people involved had a plain conversation with them? Bear in mind, not everyone facing their dying wants to know or have a number of weeks or days left thrust at them. If you are serious about respecting the patient’s wishes you have to understand their point of view won’t necessarily be the same as your own.
2. What does the patient want? Why do they want it?
How realistic are their expectations given that when it gets tough it will be other people who have to cope . What is realistic depends on available resources and support people as well as the progress of a person’s illness. I have occasionally seen people confuse the place of dying with a good dying. Particularly when someone decides that dying at home is the main goal. My personal view is it’s fine, as long as symptoms can be well managed in the home. It isn’t always easy or possible to achieve this.
3. What do you want? What do you think you can cope with?
Carers aren’t superhuman or suddenly all competent at everything nursing. There’s a reason it takes years to become a professional nurse, they are very skilled people. You can help but you’re not in charge. Dealing with dying is a cooperative effort and must include input from a range of people. Being respectful of others when under pressure is important. I’m not medically trained in any shape or form. Most people aren’t. But if you are, when it comes to caring for someone you love, you are family or friend to the person who’s dying – Not their clinical attendee.
Be prepared as much as possible. This means asking questions and if you’re like me, making notes because after all the emotions, you can’t remember.
Co-operate with others who are involved. Being respectful gets more done than frustrated anger.
Be flexible, deal with things as they arise. What might have been fine last week doesn’t necessarily work today. You can’t control what happens, only how you respond.
Pace yourself. A good dying requires the efforts of a number of people.
Meg Brassil, Consumer Representative
Palliative care will affect all of us at some stage in our lives whether as a patient, carer, family member, neighbour or friend. To find more trustworthy information helps us understand, plan and care, visit the How to Care section and At the End section of the CareSearch website.