I understand that hospice is SUPPOSED to be COMFORT CARE!!! The facility won't give my father any water because they say he'll choke on it but he is sure able to swallow all the sedative medications they shoot down his throat every few hours! How is this COMFORT care and what can I do when my mother is responsible for his decisions since he is so medicated??? PLEASE HELP, HE HASN'T HAD ANY WATER IN DAYS!!!
And any food or drink you do give him will go directly to the lungs and cause an aspiration pneumonia which will just complicate things.
A study giving IV fluids to dying patients showed that they actually have a more painful and difficult death as the fluid tends to accumulate in their lungs causing the patient to essentially drown in the excess fluid.
Artificial Nutrition and Hydration at the End of Life: Beneficial or Harmful?
It is my understanding that the liquid morphine is absorbed. You place the syringe under the tongue and slowly press the plunger. It is such a tiny amount and it absorbs faster under the tongue than through the cheeks.
And yes, it is not unusual for someone who had been ill to rally to a point of being so much better, walking, talking, eating.... but that phase is usually short lived. Many of us had seen that happen within our own families, happened with my elderly parents. Then the patient starts their journey to their final chapter.
A person's timetable for passing is always the same, whether Hospice is part of it or not. With Hospice, one knows that the patient will be pain free and that is what we want for our loved ones.
Have you actually seen the nurses administer the medications?
One option would be to simply take him home but you would have to provide 24 hour care. Could your family undertake that task?
Hospice would still be there but usually not 24 hours a day although there is an RN on call 24/7 but not to provide routine care like changing a wet bed.
It certainly sounds as though your father does want water and could possibly swallow it. They can do a type of X-ray right at the bedside to see if he can swallow.
Why was he admitted to a facility in the first place? Is it a hospice facility?
Have you expressed your concerns to the Dr who is caring for your Dad?
Checking for signs of dehydration is of little value at the end of life because it is usually present and correcting it with IVs puts too much stress on already failing organs. It is also thought that being dehydrated in these circumstances actually allows endorphins (the body's own natural pain relievers) and brings comfort rather than distress. Now seeing your father in this state will not convince you of the truth of that statement.
If it has been established that Dad really can not swallow giving him fluids will mean they will go down into his lungs which will cause great distress and possibly pneumonia.
Continue to be there as your father's advocate and support for your mother. Do not upset her with your own fears and be thankful that Dad is receiving good care and remains comfortable. Not possible to know if he is actually agitated or not. Unless you have witnessed end of life agitation you can not imagine how distressing it is both for the patient and their loved ones. You probably are seeing real fear in his eyes, many people never accept the fact they are dying while others calmly wait for the end. it sounds as though Dad had remained active so it has come as a great shock to him to suddenly being faced with the unknown. Do what you can to resolve issues that you perceive as being wrong. You may be very knowledgeable about drugs but have never been involved in end of life care where they may be used differently, so cut yourself some slack and concentrate on spending what little time Dad has left calmly and comfortingly.
The nurse told me on Friday they would begin 24 hr attendance when they thought she showed the signs that death was near. She passed away unexpectedly and quickly on Sunday. Her time schedule, not ours. It's never easy to lose a parent. It feeds into our fears of abandonment. I will pray for you to find peace. Please use the counseling service that hospice provides. Bolster your mother, she needs you.
If you attempt to give your father water yourself they will throw you out of that room so fast it'll make your head swim. Keep insisting on patient-centred care until they agree to a trial swallow.
But if he can swallow Oromorph, he can swallow thickened fluids. Get some plain water thickened and ready.
Keep in touch. Hugs.
YOU WILL GET NOWHERE IF YOU ARE AGGRESSIVE OR UNREASONABLE. It is imperative that you keep calm and keep to the point: that your father is asking for water and it is being withheld. You should continue to make the point that your father is still able to swallow medications, but do it calmly. Get angry, you'll be out on your ear, your father will lose his advocate, and your mother will lose her only comfort.
These are the current NICE guidelines on drinking at end of life (they are of limited help to you):
Hydration – signs of dehydration should be checked for every day and help should be given to keep their mouth and lips moist. People who do want to drink should be given help to carry on drinking if they can still swallow. While they are drinking, it is important that they are checked for problems with swallowing or drinks going down the wrong way. However, some people may not want to drink in the last days of their life, and swallowing may become difficult. Their doctor might suggest giving them fluids through a drip or tube. This might make them more comfortable, but for a person who is already at the end of their life, it won't necessarily help them live longer, and it might not be the best option for everyone.
Plus he was only on 20 mg of morphine 4 times/day and the next day he was upped to 20 mg or morphine, 5 mg of methadone, 1/2 mg of lorazepam, plus holidol and 2 different steroids. When I asked why the increase they responded with, well, he's getting agitated. He's only agitated when they wake him up to turn him over, otherwise he has been remaining very calm. My mom says that she doesn't know what else to do and she is not as knowledgeable about prescription drugs as I am so she doesn't realize how many sedative drugs he is on regardless of the dosage.
Hospice care is for the family as well as for the patient. Ask to talk to the social worker or chaplain (if that is meaningful to you) for an explanation of what is happening. Ask how he can take the medication OK but not water.
This is an exceedingly painful experience to go through. I am so sorry. I don't know if it is any consolation but it would probably be an even harder experience if hospice weren't involved.
To be on hospice your father had to be evaluated as being in the very end stage of his illness. He is dying, and would be if he were on hospice or not. This is exceedingly hard to accept, but perhaps talking to the hospice staff will help somewhat.
Your mother does get to make the decision for your dad. Please realize that this is agonizing for her, too. She is doing her very best to act in her husband's best interest. Please don't blame her for hospice "killing" him. That is not what is happening.
I'm so sorry to hear what you are going through. I know its very painful to see your dad in this condition. Please check with the doctor and nurses. I hope they can help you. My thoughts and prayers are with you.
Try to keep calm. Are the nurses using sponges to keep your father's lips and mouth comfortable? You should see little sponges, like sort of triangular Q Tips, being used.
Is your father conscious? Is he asking for water?