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The dreaded decision, Hospice

12 years 1 month ago #13583 by Gene Beane
Aimeth,
Does your husaband talk about your trip, I can't imagine how you were able to get him up and about at Disney, but you did and that all that counts. I didn't think you were this close to the scenario you have now. I think about you often, Today I stopped at church and lit a candle for all cancer patients, especially the ones here who are having issues. Thats all we can do sometimes....Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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12 years 1 month ago #13582 by aimeth
I understand what hospice means and I guess that is why is such a hard decision to make. I feel that maybe there is something else we can do. But deep inside I know that we will end up on that road soon. For now I have a nurse that comes every other day and an aid that helps him take showers, going up and down the stairs. I am afraid he is going to fall down on me. I am trying to get a hospital bed which I will be setting up in my den. This way he will be on the ground floor and also be part of the activities around the house.

Karen, I do have some help with my little one. My neighbor who is a God sent angel helps out with him. She also takes care of her granddaughter and other neighborhood kids which are all about the same age. So he loves to go there and play.

My husband is in and out and I believe that he knows that the end is near. But he has a hard time communicating. I attribute it to the medication. His doctor who we will go see tomorrow seems to think he is close and she will certainly let me know when she will make the call. Maybe tomorrow maybe next week....I don't want him to suffer I don't want to let go! Thanks, Aimeth

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12 years 1 month ago #13581 by wsilberstein

Willberstein,
You are correct, a hospice patient is not suppose to have life prolonging
measures, thats why I was confused by some cases where food is given as needed or desired by the patient. When my dad went to Hospice no food or drink was given, just morphine. So who decides? IS IT SITUATIONAL?

Dear Ginger,
The purpose of hospice is to ease dying, not to hasten death. Many dying patients are conscious and able to eat until near the end. Most would not choose not eating as a way to ease their dying. Once a patient is comatose and cannot eat, the decision to stop tube feeding would depend on whether it seems to be prolonging life unecessarily, and whether the patient would be aware of hunger and suffer as a result of stopping feeding.
My mother was conscious almost to the end. In fact, in her last awake moments, the morphine that eased her air hunger made her think that she was at a party with all of us at her bedside. Although she could barely eat, she chose to have her Jello, but she also chose to stop all medications including the insulin she had to take as a result of the prednisone for her chemo.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 1 month ago #13579 by Julie
Ginger, I think what the phrase no life prolonging measures refers to is no tube feeding. The criteria for hospice is that they have a terminal disease and the prognosis is death within 6 months. So some patients who elect hospice early on would have meals and water. The hospice facility where i used to live had a chef who talked with the patients do find out what their favorite meals were and then prepared them for the patient. Many patients will be on oxygen because it helps make them comfortable. It is not seen as life prolonging in this case.
When my family decided Hospice was appropriate for my Dad his feeding tube was withdrawn and he was started on morphine. He had a severe stroke and Mother had chosen to have a feeding tube installed until all of us could get to the hospital.
I have a friend whose husband was in the hospice facility while he was still mobile because his dementia was so severe she could no longer look after him because she could not get any rest. He was able to eat meals up until about a week before he died. Stopping eating is one of the later signs of dying I believe.

Volunteer Coordinator
ABLSC

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12 years 1 month ago #13569 by Gene Beane
Willberstein,
You are correct, a hospice patient is not suppose to have life prolonging
measures, thats why I was confused by some cases where food is given as needed or desired by the patient. When my dad went to Hospice no food or drink was given, just morphine. So who decides? IS IT SITUATIONAL? Recently a forum members dad was in hospice for months, I didn't understand that...Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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12 years 1 month ago #13568 by wsilberstein

You see my husband is terrified of dying and that makes it harder on him. But I believe that he is not sure of what is going on right now.

A while ago he had mentioned that he wanted to be home so I will do my best to keep him home.

Dear Aimeth,
Hospice care can be done entirely at home. My mother moved into assisted living when she became very ill with leukemia. Hospice took over her care and provided a packet of medications to ease any end of life events. The only problem we ran into at the end is that the use of morphine to ease air hunger was never explained to us and when she went into respiratory distress she chose to go to the hospital. It is also true that the assisted living staff did not contact hospice for instructions and was not willing to administer morphine. Had I been with her at the time we could have perhaps avoided the trip to the hospital, but when I spoke to hospice they told me that she could go to the hospital.
The purpose of hospice is to ease dying. Any medical treatment including surgery, aimed at relieving suffering, is acceptable, but a hospice patient cannot have life prolonging treatments. That does not mean that all treatment must be withdrawn, as the palliative chemo my mother received was relieving symptoms; however, a patient who desires that any or all heroic measures be used to sustain life cannot be a hospice patient. Your husband, or whoever is authorized to make his medical decisions would have to agree that he would not be resuscitated.
I believe that the information I have provided is correct, but I do not know if there are variations or exceptions in different jurisdictions. My guess is that you can find information on-line about the different aspects and varaitions of hospice.
Aimeth, my heart goes out to you. If your husband is afraid of dying but realizes that is where things are going, accepting hospice can ease his course.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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