Hospice Care/103 yr old hospice patient
QUESTION: While no one can predict when death occurs, what are the signs I should look for?
My 103 yr old grandmother was admitted to a hospice house on 7/1 b/c she could no longer swallow. She has been immobile for 3 months now and has not had food or water in 5 days. She has been given morphine and ativan consistently every 5 hours and is now sleeping 24/7. Her pupils are not dilating to light. She does not seem like she is in pain - only when nurses try to move her.
She has some pulmonary adema build up w/ her congestive heart failure too. Heart is irregular but still hanging in there.
what are signs that I should look for in trying to assess her life expectancy.
thanks in advance.
I heard that she may get a fever and get purple feet or knees before she passes. Does this always happen or could she pass without those symptoms?
ANSWER: Hi, Kelly--
Thank you for writing. 103 is pretty impressive! I'm glad your grandmother has you with her.
Morphine and Ativan will tend to make one sleep a lot, although the purpose of course is no pain and no anxiety. I used to think that patients who seemed to not want or like to be repositioned (or who outright said they didn't like it or want it) ought to be able to choose not to do. Then I had a patient who quickly developed pressure ulcers which were themselves pretty painful, because she refused to be turned. So I'm glad that the nurses are turning her. It is a minor annoyance for her, compared to what she would experience if she were not moved. Her grimaces may well be just a response to being moved at all, and not necessarily pain. If her pupils are not responding to light, it is unlikely that she is experiencing much of anything--almost like being under light sedation.
Pulmonary edema--basically more fluid in there than there would be normally--is common with heart failure. The congestion in congestive heart failure is just that. You may even be able to hear little watery sounds with her breathing.
There is no way to know when she will pass. If she is not taking fluid or food, it could be as long as a few weeks. I had a patient with dementia who decided she had had enough and began to refuse food and fluids. She was able to speak some, and her wishes were clear. I really thought she'd be gone in a few days but it was more than two weeks. So, no telling. (Of course she was not 103--I think she was in her forties.)
The body does some unusual things in the process of dying. Life sustaining activities (like the urge to breathe, thirst and hunger) aren't there any more. Interestingly, the lack of fluid and food seems to stimulate endorphin production, so she may be getting some of her symptom management from her own body. (I've always thought that was pretty cool.)
Heart rate may be somewhat regular and just slow down and get weaker, or it can be erratic in its rate. Blood pressure may also be a bit unpredictable. I have also seen patients who developed fevers off and on in the last weeks. The purple coloring that you describe is known as mottling. It is related to the decreasing effectiveness of the heart--if circulation isn't very good (which it wouldn't be if she is lying in bed and not using her muscles, of course), then return of blood from arms and legs to the heart is slowed down. Blood pools, basically, because it is moving so slowly. And gravity will tend to have the blood pool on the lower half of her body. You'll notice this more and more. There will be times when her arms and legs may feel cool or cold to the touch as well. And then, they may warm up a bit. The amount of mottling varies over time and from person to person. But it is an indicator that things are slowing down.
I'd say that when you notice that her breathing is very irregular and she has relatively long periods where she is not breathing, say, twenty seconds or so, that is also an indicator that she is moving toward dying. You can hear examples of breath sounds in dying people if you google or search You Tube. This may help you recognize them when you hear them.
All these things can occur, or only some. I will say this. It sounds as though she is being well managed medically and that you care about and for her. When she passes, I would expect it to be very gradual and very peaceful. Often at the end, there is a period of apnea (not breathing), followed by one or two big sighs and then... nothing. There must be no heart beat and no breath sounds for at least one minute (I always listened for three minutes), before it can be assumed that she is gone. You will notice, almost immediately, a change in her coloring as blood is pulled down by gravity, and so her face will become kind of waxen and maybe a little yellowish. You'll know it when you see it.
Meantime, even though she is essentially sleeping, you never know how much can be perceived. I would talk to her, tell her how much she is loved, what a wonderful mother and grandmother (and, I'm assuming, great and maybe great-great) she is and has been, and that she will be missed, it is OK to go when she is ready. If there is something for which she might have liked to be forgiven, now's the time, as is any apology that she might have welcomed. I would not bring up any new stuff or make any confessions, of course. Keep things calm and positive. This is not the time for any kind of tense discussion (I have seen families who were normally well behaved, come apart at the bedside of the person who was dying, not out of grief but out of anger at each other over old hurts or what they were going to get, believe it or not).
It is said that the last sense a person has is hearing. Assume she can hear you and fill her hearing with good and sweet and wonderful things. She's still in there, until she isn't.
God bless you and your grandmother, and your family.
Peace to you and yours,
---------- FOLLOW-UP ----------
QUESTION: Thank you for all of this very valuable and comforting information, Christine. You did such an incredible job of explaining it all and I can't tell you how appreciative I am that you wrote me back on July 4th evening.
Nan took a turn for the worse last as of 5pm yesterday, July 4th. She is no longer responding to us, has developed severe mucous rattle (really frightened us all night as we thought she was in pain), fluid building in lungs, bluish color on her feet, low grade fever and irregular heartbeat. We know she is nearing her time but just pray it doesn't drag out. We are hoping she is not suffering and continuing to give her morphine, Ativan, and now arphone to help manage the mucus in her mouth.
We continue talking to her and comforting her even though she can't respond and playing serene music. We just want the suffering to end for her. I really pray she doesn't last for several more days. It's unbearable watching her in this condition. She is so frail and petite, I was hoping she would have a peaceful quiet death but this death rattle is something we did not expect and is very disconcerting.
So my last question -- does this mean she will likely die from heart failure or can she actually choke on the mucus? Do people get a high fever or just a slight fever before they die?
Thanks in advance.
Hello, again, Kelly--
I'm honored to be asked to help, no matter what day it is. :)
From what you describe, I would almost expect Nan to have passed by the time you have the chance to receive this.
Fever at the end can be slight, or more than slight. It can also come and go. Sometimes suction can help with the mucus that you hear, but in all probability, she is not aware of it. The sounds you hear are what is known as a "death rattle." I haven't known of anyone choking on the accumulated secretions. You might be able to position her so that the fluids are drawn toward her mouth and either come out of her mouth onto a pad, or are able to be suctioned out if you have a portable suction machine.
She certainly could pass as a result of her respiratory and circulatory congestion. No matter how it happens, the biggest concerns are pain and anxiety. Not being able to breathe makes people very anxious. So long as you are able to continue her medications, I believe she will have a peaceful passing. The noises you hear, the changes you see, these are not things she perceives. For her, this is like being asleep, sinking deeper and deeper.
I love that you are talking gently to her and have the music. I cannot imagine a nicer way for her to experience this last earthly event. My hope is that this kind of love and care is available for anyone who wants it at the end of life. I am heartened that your Nan has you and your family to give her this last most precious gift.
Peace to you all,