I’ve looked after quite a few end of life care patients. It can be challenging at times. What happens when the family can’t make that tough call to make their loved ones palliative? When the patient is having a good day while the family are there – when earlier they were pretty much comatose. The patient is asking for food but cannot swallow safely and the food just sits on their vocal cords. But the family still still want to feed them because they don’t want them to starve. You give the family all the information and consequences about the safety of their loved one and making them comfortable. But the family want to ensure that their loved one doesn’t go hungry, after all they are asking for food, so the family feed them -knowing that the patient will suffocate. How can the family possibly understand when love is all they think about and they don’t want to let go? How do you make the family understand the difference between medical management, keeping a patient nil by mouth and palliative care where they are able to eat?
I recently came across a family member who was finding it hard to come to terms with their loved one becoming palliative, even the Dr needed help explaining it. I had my first opportunity to chaperone the conversation. The best way I could describe the situation to the family was that this patient will have good times and bad times. This morning she was having a bad time, not able to respond to me, and now, she is having a good time, talking and asking for food. I explained how during medical management we have a duty of care to cause no harm – so the patient could not eat if they were not palliated. However, palliative care is about making the patient comfortable in the bad times so they do not suffer and providing them with what they want and need – so they could eat, when awake and alert, for comfort. I discussed all the care and services that would be provided to the patient and that by making the patient palliative we are respecting the patient’s and family’s wishes and preserving their quality of life without distressing and causing more harm to them.
On the flip side, what if the patient can swallow and they refuse to eat because they are so distressed, climbing out of bed and in pain – not comatose. It’s like they are in a different place. I’ve had patients like this too where I had to make a decision on what medication to give them. It’s a hard decision sometimes because you don’t want the patient to be comatose, just comfortable. I was finding it difficult to ascertain whether the patient was in pain which was causing agitation or just agitated. In this case I just started with small amounts of medication to reduce agitation before giving pain medication – to ensure that the patient could be settled with less stronger medications.
I really feel for palliative patients. It can be hard to get it right sometimes. Family plays an essential role in the care and comfort of these patients. We cannot disregard their feelings or concerned regarding their loved ones. All we can do is continue to do our best and make these wonderful old souls comfortable. After all they have had a hard life, it is only fair they are able to rest and go in peace.