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Old 02-26-2009, 03:41 PM   #1
Ganine Vanalst
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End Stage Liver Disease Hospice What to Expect

I am hoping there may be some medical professionals or people who have some experience with end stage liver disease (ESLD) and hospice care that may be able to provide me with some information and/or share their experiences.

I am taking in and taking care of a family friend who has ESLD. He will be in a hospice program paid for by Medicare and living with me until he passes away. He has no family other than mine, and he has no where to go other than a nursing home; he needs 24/7 custodial care. He is really scared and doesn't want to be in a nursing home. He was in a nursing home briefly a week ago and it was a horrible place and he is terrified of being sent back. Only reason he left the nursing home was his condition deteriorated and he had to be returned to the hospital for management of acute symptoms. He will not likely live past another few months; one doctor predicted 8 weeks at most, but such things are hard to predict. He is currently in a hospital-based hospice program in New York City, but he can't stay since the hospital bed is only for hospice patients with acute symptoms. Since I have volunteered to take him in, he can stay for another week to be rehabilitated and stabilized so that hopefully he can fly to Washington to live out his last days with someone he knows. Right now he is scheduled to arrive on March 4th through a great program called Angel Flight (w/f/s www.angelflight.com). There is a fair chance he may not even live that long or will deteriorate to the point where he can't make the trip. I am preparing myself for what to expect assuming he does make it that far.

I understand the different complications of ESLD in general, but I quess what I really am trying to get my head around is actually dealing with some of the situations I might encounter so I'm prepared. As an example, here is a very sad story of the last days of one women's life (w/f/s unless reading a graphic description of someone passing away is too upsetting The Last 5 Days). I think this might be the worst situation I might have to deal with practically speaking, but reading this was helpful because now I can begin to come up with some strategies on how I can deal with a situation like this if I'm by myself and this should occur. He has had episodes of esophageal bleeding in the past. He has ascites and diabetes.

I don't really have specific questions as this point (this was just decided yesterday and I am just beginning to process it), but seeking to gather as much information as possible a head of time. If anyone reading this has any experience, advice, suggestions, etc. dealing with ESLD, hospice and/or medicare that they think might be helpful, I would greatly appreciate it.
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Old 02-26-2009, 03:55 PM   #2
Bob Guere
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Re: End Stage Liver Disease Hospice What to Expect

I can't give you any specific advice. All I can tel you is, my Mom spent her last days at home with Dad in hospice care, and it made all the difference in the world to her well being. (I was 3000 miles away most of the time unfortunately.) I can only assume it will be the same for your friend.

What you are doing is truly honorable. I hope all goes as well as it can. God Bless.
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Old 02-26-2009, 03:58 PM   #3
Katherine Derbyshire
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Re: End Stage Liver Disease Hospice What to Expect

I'm not a medical professional, but I would suggest talking to the hospice. The hospice program for my mother-in-law (terminal emphysema) was very supportive and helpful for family members, not just for her.

I would also *strongly* suggest that you make sure you are named in whatever health care proxies, do not resuscitate orders, and other paperwork your friend decides to do. Since you aren't a blood relative, you have no medical decision making authority unless he gives it to you, in writing, in advance. The hospice can help you sort out what needs to be done to make sure his wishes are followed.

Katherine

PS What Bob said, too. You're doing a Good Thing.
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Old 02-26-2009, 04:02 PM   #4
Sam Ser
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Re: End Stage Liver Disease Hospice What to Expect

wow. just wow.

i know you want information right now, so i'm sorry that i don't have any for you. there are support groups and online forums for just about everything, so i'm sure you can find some folks online or even in your area who can guide you.

i just wanted to say that it takes a tremendous amount of selflessness and courage to do what you are doing. no wod is as difficult as what are you taking upon yourself, and no performance in the gym can approximate the strength necessary to see you through this.
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Old 02-26-2009, 05:12 PM   #5
Robert Pierce
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Re: End Stage Liver Disease Hospice What to Expect

I have a fair amount of experience here, having served as a hospice director for a couple of years and having had a number of patients in hospice.

Ditto Katherine. Talk to the hospice folks. Most are extremely caring, generous, and they really treat the entire family, not just the dying patient.

Medicare covers all hospice illness-related meds and equipment. If your relative doesn't have a doc, generally the medical director of the hospice will serve as the physician.

The link you include describes a death that, IMHO, is atypical for a patient on hospice. The vast majority of the time, hospice patients die peacfully and quietly. I would say that most patients with ESLD will have some other cause of death beyond variceal bleeding (hepatorenal syndrome, hepatic encephalopathy, peritonitis).

PM me if you have other questions.
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Old 02-26-2009, 05:21 PM   #6
Sara Fleming
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Re: End Stage Liver Disease Hospice What to Expect

I was with my mother in law when she passed away from terminal cancer in her home. She was with Hospice care. It was a good experience and what she wanted. Hospice is a wonderful organization and the nurses we had visit on a daily basis were wonderfully caring and supportive.

We were given very clear instructions on what to do when and if certain things happened and what to expect near the end and when the end came.

It was not gruesome or disturbing and in fact, we did invite some of her closest friends over to say goodbye before the ambulance came and took her to the funeral home.

Like everyone else has said, you are doing a wonderful thing. From my own experience, I have to say it was a life-altering, but positive experience.


Sara
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Old 02-26-2009, 07:52 PM   #7
Ganine Vanalst
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Re: End Stage Liver Disease Hospice What to Expect

Thank you for your replies!

Bob, thank you for the kind words. Your mother was fortunate to have the comfort of your father's presence. We should all be so lucky to have our family by our sides when our time comes.

Katherine, great suggestions. My aunt currently is his health care proxy, but when/if he makes it to WA I will take over that role; I will make sure it is documented and I have a copy. There is a DNR on record, and I will make sure I have a copy too as well as any other paper work.

Sam, thank you for the kinds words as well. I don't post on other message boards and not too often on this one (I suppose it's relative as I'm up to 50 + posts in 7 months), but if there is one message board on which I am fairly confident of getting high caliber replies, it's this one.

Robert, I am relieved to hear that death via variceal bleeding is atypical. I guess since I know he has had these episodes in the past it seemed like a very real possibility to me and I wanted to prepare myself for the worst case scenario. This possibility is my biggest concern. I'd feel better being prepared for the worst while hoping for the best and most peaceful outcome. I wouldn't want to make it more traumatic for him in the last few moments of his life by not handling it as "gracefully" as possible, for example, I would want to know how to position him by myself to not cause him discomfort. My daughter is 18 but she is very squeamish with the whole situation. The rest of my family is on the East coast so it would likely only be me if a situation like a variceal bleed did occur unless a hospice staff member happened to also be present. He is arriving very late on the 4th and on the 5th a hospice nurse is coming to evaluate him and officially admit him into the hospice program local to me; I will ask the hospice nurse how best to manage it alone with the understanding it is not likely.

He does not have a doctor locally and I was wondering how that would be handled; it is good to know that the medical director of the hospice program would likely act as his physician.

Sara, thank you for sharing your experience...it helps to hear it was a positive one. As with Bob's mother, your mother-in-law was fortunate to have her family by her side.

I am sure the hospice staff will answer all my questions. Perhaps I'm jumping the gun a bit trying to psychologically prepare myself for what to expect.

Again, thank you all for your replies!!!
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Old 02-28-2009, 09:32 AM   #8
Robert Pierce
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Re: End Stage Liver Disease Hospice What to Expect

Ganine, talk to the hospice folks specifically about the possibility of variceal bleeding and what to do. Likely that if it did occur, they will come over, so you wouldn't have to deal with it alone for very long.
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Old 02-28-2009, 05:40 PM   #9
Ganine Vanalst
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Re: End Stage Liver Disease Hospice What to Expect

Thank you, Robert. I will.
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Old 02-28-2009, 07:04 PM   #10
Warren Albert
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Re: End Stage Liver Disease Hospice What to Expect

I am a hospice nurse.

I want to assure you that there is really nothing to worry about. The Hospice team will not keep you in the dark about anything you are going to experience and will not have you do anything that you can't handle as a caregiver. You will given all the medication, equipment, support you will need to make your job as a caregiver successful.

Remember, the Hospice nurses are not providing the care, they are just giving you the education and tools to make your job as the caregiver successful. They will do everything in their power to help you keep the patient comfortable and peaceful for as long as possible.

Being the caregiver for a dying person is probably one of the most difficult jobs because no matter how hard you try, the patient will continue to decline and you will feel like there is more you should be doing. Remember that if the patient is comfortable, pain free and dying where they request, you are doing your job.

Feel free to send me a PM with any further questions.
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