Hi all. My father has AML and is very much nearing the end of his life. He relapsed in October and has miraculously made it to February without treatment, only infusions twice weekly. He's avoided death by infection and everything else. But, he's now extremely weak - today, TOO weak to make it to the hospital for his infusion. Or the emergency room. Too weak to go anywhere. He's letting go and is through fighting. Now, his gums are bleeding a lot and he has blood marks on his calves (I forget their name). We're doubtful that he'll make it out of the house for any more infusions.
My question is: has anyone experienced another individual (particularly with leukemia) dying of internal bleeding? If so, any insight into what that looks like or could look like would be helpful. Our care team keeps giving us the run-around and doesn't want to answer it, maybe because of liability issues or something. Or not. I don't know. But my mom and I are his caregivers and we're nervous because we don't know what to expect. Any potential insight would be very appreciated.
My aunt's CML progressed to AML at the end of her life. She was a retired doctor, and knowing what was ahead she was still determined to avoid interventions to the extent that she withheld all information from all family members. I am sorry to tell you that the disease went a bit Technicolor on her: her DIL was forced to call for an emergency ambulance and my aunt was admitted to hospital for the last few days of her life.
I'm sorry - I realise I'm giving you the runaround, too. To be plain, we're talking about vomiting massive amounts of blood (haematemesis), though the source of the blood can be the lungs or the gut. It can be terrifying. I completely agree with you that such things are much less terrifying if you understand what is happening.
Pain and delirium are also among the commonest symptoms. Bleeding can be within the brain, and effective pain relief is essential. Important note: although these events are common, they affect less than half of all AML patients. They are therefore NOT inevitable.
The good news for my aunt, for example, was that the hospital was able to deal sympathetically with the symptoms so that her last day was spent with her son at her bedside and she then slipped away peacefully.
Perhaps the moral of her story is that if you get the professionals in now you will improve your father's chances of staying at home without overwhelming pain, fear or distress. Nothing was done for my aunt in hospital that could not have been done at home, if only she had given her GP, family and support services a chance to prepare.
"Signs that death is imminent are the same as with any other disease. Loss of appetite is the first signal that the AML patient may be dying. A person who is dying will sleep more often than not. AML patients in their final stages experience labored breathing. Each breath may be quite audible. At this point, bone pain will be severe. Doctors may suggest sedating the patient with narcotics such as morphine to ease the pain. Bleeding through the gums or around the gum-line can suggest the patient is at risk for internal bleeding. Internal bleeding in late-stage AML patients cannot be treated without causing a new bleed. Symptoms of a lethal, internal bleeding include shivers, confusion, loss of consciousness and death."
(www.healthfully.com/final-stages-aml-elderly-5525713.html)
I'm sorry you are going through this. Your care team includes hospice I hope?
Great article cwillie. That pretty well spells it out.
I am hoping you got hospice called in? They will assist you with providing care for your father and teach you things/symptoms to look for in impending death (if that’s what you want to know).
Sunfleur, perhaps a hospice facility is something you all might want to discuss?
We have end of life specialists from organisations like Macmillan, Marie Curie and Sue Ryder - presumably there are similar ones in North America?