Thread: Has anyone ever used Hospice care?

Originally Posted by mimi37

I was a part of the "dying process" as you put it. I was there every day for long hours. To see someone go from carrying on a conversation and in good spirits to gasping for air in just 2 days time period does have an impact. I would not wish anyone to have to witness something like that. You have a helpless feeling because you know you can't do anything to help. My sister and I really felt like we let our mother down. Hospice will always be a sore spot for me and my family. I just resent that you would imply that I was not actively involved.

Whoa....I think you are misunderstanding me...THe "YOU" in that case is a general statement.....not relating to you. SOrry if it offened you...didn't mean anything personal. I had a wonderful experience with the group that we had....such a great experience that my grandma is still volunteering with this same group to help others have as positive experience as we did.

Originally Posted by janelle

I feel the only time to stop feeding the person is when their body is rejecting the food, throwing it back up. That is the sign the body is shutting down to die.

throwing up the food is not the ONLY sign that the body no longer needs nourishment and or IV fluids. edema (swelling..ie retaining fluids) and not just the kind you can see......but the kind that gets in the lungs and around the heart is a BIG sign that most families don't understand is a result of the fluid. aspiration is also a big problem when the swallowing reflex is going and families insist on feeding thier loved one. let me look up something here and post it when i find it......it may help for you to understand much better than my measly explanation.

FOOD, NUTRITION, ARTIFICIAL FEEDING METHODS CONSTIPATION & QUALITY OF LIFE ISSUES

Food & Metabolism

When appetite declines and your loved one is refusing food, it's quite difficult to accept. We all know that you have to eat to live, but what many of us don't know is that if your body can't process the food because of a terminal illness, forcing nutrition in will not prolong life. There is a natural process in the dying: decreased appetite, decreased thirst, gradual withdrawal from the concerns of this world and focus on concerns about death and taking care of "unfinished business" with family.

When the body's metabolism begins to shut down in the dying process, it no longer builds the body's tissues and organs; this is what's called an "anabolic" state of metabolism. When the body's tissues and organs begin to break down, whether or not nutrition is taken in, it's called a "catabolic" state of metabolism. In the catabolic state, food is not absorbed, tissues no longer heal well, infection is difficult to cure and an irreversible downward spiral is set into motion. Whether a patient eats food, is fed a liquid diet through a feeding tube, or gets intravenous nutrition ("total parenteral nutrition" or "TPN"), the nutrients taken in will not stop this catabolic process.

Constipation, Comfort & Lack of Appetite

Knowing when the catabolic state is reached is sometimes difficult to assess and is really a question for the Attending Physician. However, there can be some very important things to be done which can improve appetite in those who have not reached the catabolic state. In the terminally ill, and especially with those who are taking several medications (especially opioid narcotics for pain), constipation can become a serious and even life-threatening concern.

Constipation is a very common side-effect of narcotic pain medications such as morphine. That's why laxatives are commonly ordered at the same time a narcotic medication is started for pain. Constipation if left untreated can become a total blockage of the digestive tract or an "impaction." The minor discomfort many know as constipation, becomes a severe problem with possible extreme pain, gas, bloating, total lack of appetite, nausea and vomiting.

A complicating factor in determining the cause of the lack of appetite and abdominal pain may be the patient's reluctance to even discuss his or her bowel problems. It can be quite upsetting or embarrassing for some patients to admit to these types of problems. Bowel function is one of the "private" areas of our life which nobody relishes discussing. Some patients feel humiliated by their need to discuss or deal with these problems. Sensitivity on the part of the family and hospice staff can go a long way toward easing the patient's reticence.

Actually knowing how often the patient's bowels are moving and their nature is really important for patient comfort. This is one reason nurses pay a lot of attention to this area. It's not a question of prying into private matters. It's essential information needed by the nurse to accurately assess the patient and act accordingly. The nurse needs to know if the bowels are moving regularly every day, couple of days or longer? Are they soft or hard? Painful to pass? Is there much straining? What color are they? Does the patient have abdominal pain, gas or bloating? The answers to all of these questions and others tell the nurse and physician much and can help them help you deal with these problems. Many patients hide their problems with their bowels and will not readily discuss these areas. One may be thinking that the patient's lack of appetite signals the "end" when the patient may simply be severely constipated.

So before anyone concludes that a "catabolic" state of metabolism has set in, one has to make sure that there is no constipation or impaction involved. To prevent such complications, hospice standing orders include progressively stronger laxatives and "bowel programs" such as phosphate enemas and if necessary, mineral oil enemas. Hospice nurses are experts at resolving these sorts of problems which can be severely uncomfortable for their patients.

Simply taking a stool softener such as Colace (docusate) is not enough for those patients taking opioid pain medications. Stronger laxatives such as PeriColace (docusate + casanthranol) or Senokot (from Senna) are used in increasing dosages as necessary to keep the bowels moving. If the patient has not been able to prevent constipation from becoming serious, the nurse administers enemas, perhaps more than one day in a row, in order to clear out the blockage. Many nurses find that mineral oil is extremely effective in softening hardened stool in the large intestine and rectum. Because the large intestine cannot reabsorb the oil like it does with water in the bowels, the stool remains softened and can be removed with a simple flushing enema of warm water or phosphate. Patience is necessary, and sometimes, applying an oil enema and then waiting till the next day will allow for easy removal. A patient who has an impaction may find an abrupt approach much too painful for quick removal of hardened stool. The hospice nurse must work with and respect the patient's ability to tolerate the procedure.

It is quite common to find that a patient who had been severely constipated or impacted may regain their appetite, energy level, become more responsive and eat or drink much more than earlier. Adequate medication for bowel management is essential to patient comfort.

Artificial Methods of Feeding, Tube Feedings and IV Nutrition

Artificial methods of feeding a patient are some of the most controversial interventions available, along with other forms of prolonging or supporting life that would not continue without doing something to assist the patient. Patients who lose consciousness and slip into a coma cannot eat on their own; patients who have severe strokes with consequent injury to their brain function often cannot eat on their own and may have serious swallowing difficulties which make oral feeding "contraindicated"...the food, if given, may be taken down into their lungs and "aspirated." Anyone who cannot consciously swallow and also "protect their airway" (by making sure the food goes down into their stomach) is at risk for aspirating food into their lungs, causing a type of pneumonia called "aspiration pneumonia." For the terminally ill, adding a case of "aspiration pneumonia" to their difficulties may be the final stroke that takes them from us.

To avoid aspiration pneumonia, some patients or families, with their loved one's permission (hopefully) may request the doctor to place a feeding tube of one sort or another. Liquid nutritional formulas are given through these tubes and the patient is often not allowed to take any food or liquid by mouth/orally, in order to avoid aspirating the food or liquid into the lungs. Tubes that go into the stomach are "gastrostomy tubes" or "G-tubes." Tubes that are placed down the nose into the stomach are called "Nasogastric tubes" or "NG tubes." Tubes that are placed down the nose into the small intestine are called "NJ tubes," because they pass from the nose down into the jejunum, a section of the small intestine.

When the patient has a disease of one or more of the digestive organs which makes it impossible for the patient to digest food, the surgeon may place a central intravenous line ("IV") for the purpose of giving nutrition directly into the blood vessels. A patient who gets all of his or her nutrition through such a central line is getting "total parenteral nutrition" or "TPN" for short.

Quality of Life Considerations

Placement of feeding tubes into the stomach or small intestine is common in patients who have had a stroke which interferes with swallowing, but who otherwise do not have a terminal illness. They are perceived to have a chance to maintain an acceptable "quality of life" which "justifies" the placement of the artificial feeding tube. In those cases where the patient does have a terminal illness, the patient or family must "wrestle" with the decision of whether or not to place a feeding tube to get nutrition into the patient when the patient can't swallow on his or her own. Placing a feeding tube into the actively dying patient would normally be considered inappropriate, because the patient cannot absorb the nutrients. A physician would most likely state that he or she could not "justify" placing a feeding tube in that situation.

CONT FROM ABOVE

If the patient has a terminal illness and needs a feeding tube, but would live for a "reasonable" length of time and have a decent quality of life, surgeons will usually agree to place a feeding tube. What constitutes a "reasonable" length of time or what constitutes an "acceptable" quality of life are questions which medical ethicists struggle to answer and which families and patients must answer every day. Many surgeons would refuse to place a feeding tube into the actively dying. Putting the patient through the trouble of the procedure would not bring results which would improve the patient's longevity or quality of life. Some health professionals might consider the placement of a feeding tube at such a time, a form of cruelty.

Some health professionals may question whether the interventions are being performed for the welfare of the patient or to somehow make the family members feel better, less guilty, or comfortable. Medical social workers are experienced in assisting families work through these types of decisions and should be utilized when family conflicts may interfere with the welfare or wishes of the patient.

I keep telling myself I am not going to come back to this thread because it is upsetting, but somehow I keep coming back. In my mother's case, we decided very late on a Sunday evening to go with hospice. It was well after midnight when we signed the papers. Monday morning they removed her feeding tube. Tuesday morning, she asked me why they were starving her to death, she said she was very hungry. I had to expalin to her that this was part of hospice. This is when she decided she did not want hospice. They told her she could not change her mind. Sometime before I got there Wednesday, they had removed her oxygen. This was when I found her lying flat on her back in bed and ordered that her bed be raised back up. Later that evening was when she began having trouble breathing. The only way I could describe it is that it would be like if you had been running for a long time and couldn't catch your breath. My sister's stepson's friend is an EMT and he assured us this was not the "death rattle" that people often describe. She just couldn't catch her breath. Later that night she died.


I meant to add, that not once from the time that we signed the papers until a half hour after my mother died did we have any contact at all with anyone from hospice. And when she did arrive, she rushed us out the door. No "I'm sorry" or anything like that. Somewhere along the line, someone had told me that hospice was there for the family as well as the patient. But we surely didn't see it.

mimi......i'm sorry you're upset. it sounds like you had a very bad experience and i wish you would have had the hospice i work for taking care of your mother.......she would have had much better care. i don't understand and you don't have to bother with explaining to me but.......in order for the feeding tube to have been removed, she would have had to sign for it first........unless she was comatose or had dementia or alzheimers AND an advance directive stating this was her wishes or a court order. and you can always fire you doctor/nurse/ whomever is providing medical care to you no matter what (again unless there is a court order or psychiatric issue going on)........so i just don't understand how that hospice is operating. they must be making the rules up as they go.......they really need to be investigated