It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Death & Dying Message Board

Putting my husband in hospice - Advice please!!


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 09-29-2016, 05:08 AM   #1
grlwundr
Junior Member
(female)
 
Join Date: May 2011
Location: NJ
Posts: 12
grlwundr HB User
Putting my husband in hospice - Advice please!!

Since April my husband has been in a PVS and on a ventilator. The doctor says his neurological prognosis is poor, but he is able to breathe on his own and he's not brain dead.

He's developed stage 4 pressure ulcers on his sacrum and buttocks and now he has gangrene in his right foot. The doctor says that at this time it wouldn't be unreasonable to remove him from life support and if he survives, transfer him to hospice.

If and when they transfer him to hospice, they will only provide comfort care, meaning they will withdraw all medications, except for pain and to relax breathing. He has a feeding tube and they will stop nutrition/hydration and that's where I'm having a real problem.

I don't want them to stop the nutrition/hydration unless it appears that his body is breaking down and will no longer tolerate it. Also, doesn't a person have to be terminally ill in order to qualify for hospice? My husband's condition would be stable if it weren't for the pressure ulcers and gangrene.

Nobody knows whether he would eventually come out of the PVS or not. His family is saying just go ahead and "pull the plug" and "take him out of his misery."

I know I may be having false hope, but I would just like some advice from someone who may have gone through something similar.

Thank you.

 
Reply With Quote
The following user gives a hug of support to grlwundr:
movielover40 (09-29-2016)
Sponsors Lightbulb
   
Old 09-29-2016, 06:26 AM   #2
rosequartz
Senior Veteran
(female)
 
rosequartz's Avatar
 
Join Date: Jul 2005
Location: Chicago,IL
Posts: 11,158
rosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB User
Re: Putting my husband in hospice - Advice please!!

I'm so sorry to hear this. How old is your husband? What do you think he would want? can he communicate at all and give you some direction? I think I would get a 2nd or a 3rd opinion also.

 
Reply With Quote
The Following User Says Thank You to rosequartz For This Useful Post:
grlwundr (09-29-2016)
Old 09-29-2016, 06:49 AM   #3
grlwundr
Junior Member
(female)
 
Join Date: May 2011
Location: NJ
Posts: 12
grlwundr HB User
Re: Putting my husband in hospice - Advice please!!

Thanks, Rose.

He's 62. He has his eyes open and some facial gestures (yawning, grimacing) but he's unable to move.

I'm glad you asked that question. He wouldn't want to spend the rest of his life connected to tubes. I guess this is just for my peace of mind. I don't want to feel that there was any possibility for him to recover and I just gave up on him.

I don't know if hospice will consider my request to continue the nutrition/hydration until his body won't tolerate it. I will see if I can get a second/third opinion.

 
Reply With Quote
Old 09-29-2016, 06:57 AM   #4
rosequartz
Senior Veteran
(female)
 
rosequartz's Avatar
 
Join Date: Jul 2005
Location: Chicago,IL
Posts: 11,158
rosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB Userrosequartz HB User
Re: Putting my husband in hospice - Advice please!!

I understand wanting to do all you can for him, especially if he can recover.
Even though he can't move, is he cognizant? would he be able to "signal" his feelings to you, with his expressions or blinking, or squeezing a finger? The best thing you can do is to talk with the hospice people, talk with the doctor, and express all your concerns. Tell them you want to keep the nutrition going, etc and ask their advice also. I think I would want to know 1) if he CAN recover, and 2) if he does recover, what quality of life would he have.
I'm sorry again you and your husband are facing this. I know it isn't easy. Do you have any other family? Children? does he have brothers/sisters? Talk with them and get their opinions also.

 
Reply With Quote
The Following User Says Thank You to rosequartz For This Useful Post:
grlwundr (09-29-2016)
Old 09-29-2016, 08:51 AM   #5
movielover40
Senior Veteran
(male)
 
Join Date: Oct 2013
Location: Michigan
Posts: 1,138
movielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB Usermovielover40 HB User
Re: Putting my husband in hospice - Advice please!!

Praying for your husband.

Hospice was very good to us when my dad was dying.

Best wishes to you going forward.

 
Reply With Quote
The Following User Says Thank You to movielover40 For This Useful Post:
grlwundr (09-29-2016)
Old 09-29-2016, 10:10 AM   #6
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,467
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Putting my husband in hospice - Advice please!!

Hello there. I am really sorry to hear you are going through this. I know allot about hospice.

First of all you stated "Also, doesn't a person have to be terminally ill in order to qualify for hospice? My husband's condition would be stable if it weren't for the pressure ulcers and gangrene." Yes. A person has to qualify for hospice and the qualifications include having a terminal disease. Before you do anything you need to speak with the doctor who suggested this and ask them under what diagnosis would he qualify for hospice?
You can also have a hospice company come in, read his chart, and evaluate him to see if he actually qualifies. There used to be a diagnosis called "failure to thrive" which just meant that a person was in distress and wasnt getting better, this no longer qualifies for hospice. I am very curious as to what they would put him on hospice for. My only thoughts are that they may be expecting things to go down hill very quickly once removed from the ventilator.

The benefit of hospice is this: A. he will get pain meds which under any other cirucumstance cannot be administrered. Things like Subcutaneous morphine, (under the tounge and he doesnt have to be alert to get this) are used ONLY in hospice situations. Bascially, they will guarantee him to be pain free and comfortable. Without hospice, this is hit or miss whether he can feel anything. You mentioned the grimacing- this is usually a sign of discomfort.

The second benefit is for YOU. The family of a hospice patient is entitled to full counseling and grief therapy, as well as a pastor, priest, Rabbi, or whatever religious assistance you may need for as long as you need it. Many people do not want this while everything is going on, but find that 6 months later, some grief counseling is a good thing. You would still be covered.

Hospice covers things for comfort such as hopital beds, oxygen, an aide to sit with him when the nurse isnt present, all sorts of medical benefits. This can be helpful financially.

And, lastly, food and hydration ARE NOT REMOVED just because a patient is on hospice. The only time they are stopped is when the patient cannot tolerate a feeding or is developing problems eliminating waste or fluids and at that point, it becomes dangerous to feed and hydrate as the heart cannot handle it.

My suggestion to you is to get ahold of this doctor immediately, ask these questions and please know that almost every city has numerous hospice companies. They all do the same exact thing, they have to - they are mandated Federally- but each company has different people administering the care and it is likely that you will connect with one over another one. Interview more than one if possible. No one is allowed to dictate WHICH hospice you use. Remember hospice is a benefit, not a place.
It would be ideal if you could have more than one company come take a look and evaluate your husband for his appropriateness; and also to meet with you as soon as possible. Dont wait until you are in crisis mode, get your ducks in a row now so to speak.

My heart goes out to you. Having been through this several times, I know what you are going through. I hope my information helps in some small way.
Sending you hugs and prayers.
MSNik
__________________
RRMS- dx 05

 
Reply With Quote
Old 09-29-2016, 10:26 AM   #7
vrcsmith
Newbie
(female)
 
Join Date: Sep 2016
Posts: 4
vrcsmith HB User
Re: Putting my husband in hospice - Advice please!!

Im sure that you have considered all the stated concerns. My husband is now deceased after a very long, debillitating and progressive illness without hope of returning to what he would like. I was fortuate to be a to keep him at home, an option that appears not to be available to you. My husband had the wonderful experience of being under the care of hospice. There are many out there, each with their own phylosophy and regulations. Do investigate the different ones until you find one that meets your needs and expectations. Mine washed, bathed, fed, massaged and medicated..not just for pain. He had physical therapy for comfort and to maintain skn Integrity. He was supplied with all needs...even a volunteer to come stay with him for a few hrs so I could get out. His eligibility was evaluated every 3 months without end or rxpiration ss long as he met the criteria. The care extended to me even 18 months after his death. Many have their own facilities or a designated area of a hospital. I am in NJ and regulations and availability may vary state to state. Ask around, nurses know a lot and have opinions from experience without gain. Does the doctor have financial interest in the hospital or facility? This usually is required by states to be revealed. My thoughts are with you. Also, aside from this, get papers of authorization signed for you to have access to all medical and financial records. A DPA will not do it. You do not mention age, but there are elder lawyers whom you can consult for a nominal fee or look to your county's senior services...there's a lot of unadvertised help out there. Best to you..more if I can help.

Last edited by vrcsmith; 09-29-2016 at 10:30 AM.

 
Reply With Quote
Old 09-29-2016, 12:04 PM   #8
grlwundr
Junior Member
(female)
 
Join Date: May 2011
Location: NJ
Posts: 12
grlwundr HB User
Re: Putting my husband in hospice - Advice please!!

Quote:
Originally Posted by MSNik View Post
Hello there. I am really sorry to hear you are going through this. I know allot about hospice.

First of all you stated "Also, doesn't a person have to be terminally ill in order to qualify for hospice? My husband's condition would be stable if it weren't for the pressure ulcers and gangrene." Yes. A person has to qualify for hospice and the qualifications include having a terminal disease. Before you do anything you need to speak with the doctor who suggested this and ask them under what diagnosis would he qualify for hospice?
You can also have a hospice company come in, read his chart, and evaluate him to see if he actually qualifies. There used to be a diagnosis called "failure to thrive" which just meant that a person was in distress and wasnt getting better, this no longer qualifies for hospice. I am very curious as to what they would put him on hospice for. My only thoughts are that they may be expecting things to go down hill very quickly once removed from the ventilator.

The benefit of hospice is this: A. he will get pain meds which under any other cirucumstance cannot be administrered. Things like Subcutaneous morphine, (under the tounge and he doesnt have to be alert to get this) are used ONLY in hospice situations. Bascially, they will guarantee him to be pain free and comfortable. Without hospice, this is hit or miss whether he can feel anything. You mentioned the grimacing- this is usually a sign of discomfort.

The second benefit is for YOU. The family of a hospice patient is entitled to full counseling and grief therapy, as well as a pastor, priest, Rabbi, or whatever religious assistance you may need for as long as you need it. Many people do not want this while everything is going on, but find that 6 months later, some grief counseling is a good thing. You would still be covered.

Hospice covers things for comfort such as hopital beds, oxygen, an aide to sit with him when the nurse isnt present, all sorts of medical benefits. This can be helpful financially.

And, lastly, food and hydration ARE NOT REMOVED just because a patient is on hospice. The only time they are stopped is when the patient cannot tolerate a feeding or is developing problems eliminating waste or fluids and at that point, it becomes dangerous to feed and hydrate as the heart cannot handle it.

My suggestion to you is to get ahold of this doctor immediately, ask these questions and please know that almost every city has numerous hospice companies. They all do the same exact thing, they have to - they are mandated Federally- but each company has different people administering the care and it is likely that you will connect with one over another one. Interview more than one if possible. No one is allowed to dictate WHICH hospice you use. Remember hospice is a benefit, not a place.
It would be ideal if you could have more than one company come take a look and evaluate your husband for his appropriateness; and also to meet with you as soon as possible. Dont wait until you are in crisis mode, get your ducks in a row now so to speak.

My heart goes out to you. Having been through this several times, I know what you are going through. I hope my information helps in some small way.
Sending you hugs and prayers.
MSNik
Thank you MSNik,

I was told by the hospice here that when they do a "terminal wean" they would take him off everything, the ventilator, and nutrition/hydration and he would only receive pain meds. I thought this was a standard. I even said to them that I would rather they do more of a step-down, where they take him off the ventilator first, then if he survives that, then continue the nutrition/hydration until his body is unable to tolerate it, but they said they don't do it that way. It's either all or nothing.

 
Reply With Quote
Old 09-29-2016, 12:07 PM   #9
grlwundr
Junior Member
(female)
 
Join Date: May 2011
Location: NJ
Posts: 12
grlwundr HB User
Re: Putting my husband in hospice - Advice please!!

Quote:
Originally Posted by vrcsmith View Post
Im sure that you have considered all the stated concerns. My husband is now deceased after a very long, debillitating and progressive illness without hope of returning to what he would like. I was fortuate to be a to keep him at home, an option that appears not to be available to you. My husband had the wonderful experience of being under the care of hospice. There are many out there, each with their own phylosophy and regulations. Do investigate the different ones until you find one that meets your needs and expectations. Mine washed, bathed, fed, massaged and medicated..not just for pain. He had physical therapy for comfort and to maintain skn Integrity. He was supplied with all needs...even a volunteer to come stay with him for a few hrs so I could get out. His eligibility was evaluated every 3 months without end or rxpiration ss long as he met the criteria. The care extended to me even 18 months after his death. Many have their own facilities or a designated area of a hospital. I am in NJ and regulations and availability may vary state to state. Ask around, nurses know a lot and have opinions from experience without gain. Does the doctor have financial interest in the hospital or facility? This usually is required by states to be revealed. My thoughts are with you. Also, aside from this, get papers of authorization signed for you to have access to all medical and financial records. A DPA will not do it. You do not mention age, but there are elder lawyers whom you can consult for a nominal fee or look to your county's senior services...there's a lot of unadvertised help out there. Best to you..more if I can help.
I'm in NJ also Vrcsmith. It sounds like you had a very good hospice for your husband. I'm just so afraid I'm not making the right decisions.

 
Reply With Quote
Old 09-29-2016, 02:39 PM   #10
vrcsmith
Newbie
(female)
 
Join Date: Sep 2016
Posts: 4
vrcsmith HB User
Re: Putting my husband in hospice - Advice please!!

Quote:
Originally Posted by grlwundr View Post
I'm in NJ also Vrcsmith. It sounds like you had a very good hospice for your husband. I'm just so afraid I'm not making the right decisions.
ASK around and ask those questions that I suggested. It is certainly a very difficult and personal decision with no right or wrong.There are also facilities that deal solely with respiratory and ventilator dependant patients. It sounds like the time you have to make a decision is limited either due to insurance, condition, or pressures being brought...Some of these are not in your control and strictly enforced. Also, hospital beds are limited. It can be intimidating. Try researching hospice in NJ . Its a growing and competitive business. Remember that you are the consumer paying them. Whatever you decide, you will know that you've done the best that you can do for everyone with concern, love, and knowledge. My very best...write back with any concerns or questions.

Last edited by mod85; 10-03-2016 at 11:23 AM.

 
Reply With Quote
Old 09-29-2016, 05:01 PM   #11
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,467
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Putting my husband in hospice - Advice please!!

I am also in NJ...small world. Please look into Gentiva hospice, which is now called Kindred Hospice, see if they are in your area. They have a reputation for really listening to the families.

Grlwunder , hopsice is not a state to state or company to company 'thing". They are all federally mandated under Federal Law. I am assuming because of his age he was not on Medicare, but on private insurance. Either way, the benefits ARE the SAME.
If you didnt like what you heard, find another hospice to talk to- and ask them about what you were told. You are not required to use the hospital hospice or the facility that he is in. Hospice is a choice, and as I stated, the care givers are what is important. You are not being given the right information and no one can force you to withhold anything from your husband UNLESS they can validate why he would not tolerate it. This is something only your doctor can talk to you about.

Wishing you the best!
MSNIk
__________________
RRMS- dx 05

 
Reply With Quote
Old 09-29-2016, 10:08 PM   #12
vrcsmith
Newbie
(female)
 
Join Date: Sep 2016
Posts: 4
vrcsmith HB User
Re: Putting my husband in hospice - Advice please!!

You are receiving essentially the same advice from two Jersey gals with experience even though from different angles. You have rights and choices. But, it's up to you to find and exercise them. It's much too personal to advise you what to do, only how to make an informed decision that is most acceptable to you and your husband. No one has the right to judge your decision, but MSNIK is right...you have to get on with it, before that decision is out of your hands. It sounds like we have all been there and understand how very hard it is.. .the very best to you.

Last edited by mod85; 10-03-2016 at 11:23 AM.

 
Reply With Quote
Old 10-03-2016, 07:56 AM   #13
vrcsmith
Newbie
(female)
 
Join Date: Sep 2016
Posts: 4
vrcsmith HB User
Re: Putting my husband in hospice - Advice please!!

Thinking about you and checking back to see how you are doing. ..I hope that you have found some peace and support.in this difficult time..many hugs and prayers, vrcs

 
Reply With Quote
Reply Reply




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 08:54 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!