Dad is coming home under hospice care. What do I need to know?

Terri, I believe that everybody is thinking of the suffering of the dying man and trying in the best ways they know how to minimize it. It isn't an easy-just-look-it-up-in-the-book answer.

If Dad has religious views that spell out decisions regarding feeding tubes, they should be honored.

If Dad has an advanced health care directive that indicates his attitude toward intubation, that should be considered.

If Dad has appointed a health care proxy, that person needs to make decisions based on sincere and carefully-thought out understanding of what Dad would want if he were able to make the decision.

There are many factors that need to go into this terrible decision that all of us wish we never have to face.

To say that people who come up with a different decision than you would make don't care about the man's suffering is just not fair, Terri. I am sure that you are a compassionate person and make caregiving decisions with the best interests of your loved ones in mind. Please credit the rest of us with similar motives, even if we come to different conclusions.

Valencom: I think you are absolutely justified to make your decisions based on your religious views. I'm curious about your dad's wishes. Does he share your religious views and did he want the type of intervention that was given? Does he want to go through that again if he has another bout of pneumonia?

Okay, here's the Catholic viewpoint: we need to extend ordinary nutrition and hydration to someone. That means, they get food and water, even if it necessitates a feeding tube for delivery -- IF they're not already dying. If, however, a person's death is inevitable and imminent, we don't have to artificially prolong life through these procedures. My 85-year-old dad was also on a ventilator for a few months from Jan through April of this year, following a severe case of pneumonia, during which he had to rely totally on the machine to breathe. But the docs told us he could recover if given a little more time on the ventilator (to wean properly), and dad did indeed recover. He still has COPD, but it's being managed effectively with supplementary oxygen (through trake collar), and other respiratory care in a specialized nursing rehab for these type patients.
In short, the Catholic priests I consulted said that if my dad's death WAS NOT inevitable from his illness, and he could recover, he should be given every chance to do so. Just because someone may have had a stroke, and has perhaps lost speech and swallow ability, is no reason to bring on his death sooner by denying him food and water. Do that would actually cause his death.

Terri: I appreciate your thoughts, but just wanted to offer another view. Leslie's dad is 92 and this is not his first stroke. The decision has been made to NOT send him to rehabilitation and instead send him home with hospice care. As a result, it would be contrary to give him a feeding tube, since that is something you do when attempting to prolong life.

My dad had a stroke a year ago this July 1st. Like Leslie's dad he lost almost all of his speech and his swallowing was severely affected. He was 88 at the time and while I never thought I would go for the feeding tube, I did with my dad because he was trying to get better and each day he did a little more, like move his arm, etc.

My dad went through 3 months of rehab and had a dedicated speech and swallow therapist. He has now been living under our roof for 9 months. My dad can, on most days, feed himself. He has restrictions to what he can eat and he remains on honey thick liquids. He is completely incontinent and is unable to care for himself in any way.

My dad will be 90 years old this September. I don't think I did him any favors in keeping him going, but I would have always felt I quit too soon if it were not for the hindsight I have now. If he has another stroke, I will do things differently.

Leslie's dad is coming home to die. It is possible that he will be able to drink thickened liquids and not choke, but there are so many other issues with people who have the swallowing problems. Secretions in the mouth dry and build up and often need to be suctioned out. Any of these particles can be aspirated and go into the lungs spreading bacteria and causing pneumonia.

When you and I swallow, muscles in our throat automatically close the passage into the airway and allow food and liquid to go down the esophagus and into the stomach. A stroke that impacts swallowing, restricts this involuntary reflex and the airway remains open.

A feeding tube will not change the damage the stroke has caused, but it can prolong life through nutrition. When my dad was on a feeding tube, he had severe diarrhea; so much so that I wondered if anything that went through the tube did him any good at all.

All of these decisions are very difficult to make, but you really can't have it both ways. I'm sure Leslie's dad will be more comfortable without the feeding tube and if good oral cleaning is maintained it will help with comfort also.

Other things can also be done to aid comfort and this is the best you can hope for when medical intervention has been excluded and hospice chosen.

I just wanted to share my thoughts and the experience we have faced as a family. I hope it gives you a greater understanding and peace into decisions that have been made with Leslie's dad.

Sending you hugs, Cattails.

I would definitely want a feeding tube for him! Choking to death would not be a compassionate way to die. Is anyone thinking of the suffering this is causing him? This doctor sounds like he doesn't care.

My mother had a stroke that affected the right side of her brain. She had trouble speaking and swallowing. While she was still in the hospital and then later the nursing home, a speech therapist worked with her and in a few months she was almost back to normal. Now, 4 years later, no one can tell she had a stroke except for her balance issues. Let a speech therapist help. My mother gave hers a very hard time at first, I would have walked away, but the therapist must be use to this because she cleverly cajoled my mom into cooperating and my mother is very thankful she did!

Thank you Cattails. You honesty is just what I need. The hydration issue is one I had'nt thought about.

Leslie: One more thing, aspiration can lead to pneumonia which will likely not be treated. A morphine drip calms the anxiety of not being able to get enough air thus easing passing.

Thank you for the additional info. I'm sorry you are having to go through this and of course, the same for your dad and his wife. Swallowing issues raise the risk of aspiration. It could be that he will be able to swallow pureed foods or liquids that are thickened. "Honey thick" is a term for liquid consistency that may work for your dad. You may want to ask the hospice nurse how they view hydration. Our local hospice is not in favor or IV hydration as they feel it puts additional work on the body when it is in the process of shutting down. You can read about the pros and cons of artificial hydration for the dying on line and ask discuss with hospice.

Your dad may not be in pain, however, his mind is pretty alert from what you have said. No doubt he should be able to find a way to may yes and no clear. My dad can and his speech is pretty minimal. You might ask hospice if your dad is aware that hospice is on hand and if that seems to frighten him. Another question is, how is your dad's over all strength? Will he be using the commode or bed pan/ urinal. You should ask hospice how they plan to proceed and at what point they would take steps to deal with anxiety your dad may have.

I'm sure others will have suggestions. I guess if it was me, I'd want to know where he is mentally and physically now, what they plan to do as far as food and toileting. Have they stopped all unnecessary medications? Hydration and anxiety as mentioned above. You might also ask if they can go over the steps of dying with you. Maybe email you a written copy of those steps which outline how the body shuts down. It might give you greater understanding and allow you to ask other questions as they arise.

Also, it would be good to ask about what support can be available for his wife during this time and after.

I hope I am not sounding too blunt. These are the things I am familiar with where hospice is concerned so I wanted to share them with you.

I hope you will be able to visit your dad soon and make arrangements in advance to meet with hospice representatives.

Best wishes, Cattails

Dad lives in virginia with his wife who has moderate dementia. I live in Florida.
We have reliable caregivers 7 days a week from 9:30 - 7
Dad is almost 92 and has been weakened from a previous stroke, but mentally alert. This new development leaves him unable to speak well and very frustrated. The MD has advised hospice, as he believes the swallowing effect will be an issue. Dad has a DNR - and we will not be using a feeding tube.

I think Dad will hang around for a while - and am OK with the situation. I just want to be able to comunicate effectively with the hospice caregiver.
Thanks for letting me put this all into words.
L

Lesliex: Your profile says you are taking care of your dad, living in your home. So I'm confused about your question which says you live 5 states away. Would love to be helpful with any info I can provide. Could you offer something to help me/us understand what is happening.

Who is your father coming home too? Your mom? You say, "just 38 hours into this" so I am guessing that your dad is coming home straight from the hospital. What was his situation before the stoke, since this is a new one. Was he on hospice care before the new stroke.

It sounds like the decision has been made not to place your father in a rehabilitation center where a speech and swallow therapist could work with him on his swallowing issues. Also, a choice has been made for no feeding tube to keep him going in the interim. So my guess is your dad was in pretty bad shape prior to this stroke and he is coming home to die.

The goal with hospice is to keep them comfortable. Do you want someone to give you an idea about how much time he may have left. Do you want to know what steps they are taking to keep him comfortable. I'm not sure I know how to respond to your question.

Could you give us a little more information about your dad's situation and what is on your mind?

Best wishes, Cattails.