palliative care is quickly becoming a euphemism for euth

[livingbyfaith]

I felt like I had no control over the situation, that in essence they were holding him hostage til I did what they wanted. It was horrible. He wanted food and water and was denied, I wanted to give it to them and they wouldn't let me. Terrible. Be on guard everyone, be proactive. I was not.

[robinkaye]

Livingbyfaith,

Seems to me that if a patient wants food and/or especially water they should be given what they want for as long they want it. From all I have read most
people stop eating first and then stop taking fluids on their own accord. To force the withdrawal of either is cruel. My dad died of liver failure, he couldn't have food or drink
during his last days in the hospital as either would elevate the amonia levels and kill him. In looking back I wish he could have been made happy even if it meant he died a few days sooner.

I think a lot of the disagreements here are basically over semantics. A lot of people hear palliative care and think it's just end of life care when any care given; chemo, surgery etc. are all palliative when a cure is not expected. The misunderstanding can rise to a doctors level as well or else your doctor was just choosing the wrong words when describing the situation. It was wrong on all levels.

I'm sorry about your husband, I hope you find some peace as well as find a way to put this awful experience away in a 'box'. You can't keep beating yourself up over what you might have done differently. I'm sure you did all you could to take care of him while he was here and your husband knows that.

I'm glad you brought up the discussion. I'm going to check to see what boxes we checked (IL) and make sure that both of us request that IV hydration be continued, it just makes sense that pain killers
will be more effective given with fluids in and IV.

[Patience]

A medical professional friend of mine told me that if your body is not functioning properly (at the end of life), that giving IV fluids is putting liquid into a system that cannot process it properly. That the distress from that is worse than the feeling of thirst (which can be alleviated by wet mouth swabs or ice chips). It is something to ask your trusted medical team about before making the "what seems like common sense" assumption that giving liquids is a better route.

CLEVELAND CLINIC JOURNAL OF MEDICINE , JUNE 2003, http://www.ccjm.org/content/70/6/548.full.pdf

Withholding nutrition at the end of life:Clinical and ethical issues

Medically provided nutrition and hydration is not necessarily innocuous. Potential side effects of tube feeding include diarrhea, nausea, vomiting, esophageal perforation, and infiltration of formula into the lung. An intravenous infusion can cause infection, phlebitis, and electrolyte imbalances. In a dying patient with inadequate or absent renal function, supplying intravenous fluids may precipitate peripheral or pulmonary edema and increase the need for suctioning.

Decisions about nutrition and hydration should be based primarily on the potential burdens vs the potential benefits and the potential effects on the patient’s goals and outcomes. Goals of care may change during the course of illness; the physician needs to negotiate goals and priorities of care with the patient or surrogate on a continuing basis.

Many people assume that death from starvation or dehydration is painful. However, numerous case reports demonstrate that forgoing nutrition and hydration near the end of life leads to greater patient comfort, while providing it may increase edema, secretions, and
dyspnea. Ellershaw et al18 showed that dry mouth, thirst, and increased secretions in dying patients were unrelated to their level of hydration.

[Laurettas]

I agree very much, Patience, that the decisions about nutrition and hydration need to be addressed in a case by case basis. That is my concern. Not giving anything seems to be becoming standard of care at the end of life and as we have seen by several stories here lately, many are best benefited by receiving at least hydration until their deaths. In my husband's case, the medical personnel were upset that he was on an IV without even looking at him to see if it was benefiting him or not. I was with him constantly and could see that he was more comfortable with the IV providing his breakthrough pain meds and he suffered no ill effects at all from the fluids.

I have read stories from people who were removed from nutrition and hydration while in comas who then recovered and they did not perceive it as a pleasant experience. Of course they were not in the active dying phase but we often don't know how close any one is to death so it concerns me that these things may be denied to people who are not yet at that point.

[rp1954]

3rd party payers interfere with our decisions, and health institutions use 3rd party payers and "standard of care" as an excuse/abuse to attempt to wield control over patients and their caregivers, even in the face of grim object reality. Trends in insurance, regulation and government indicate that this problem will get worse before better.

[Patience]

3rd party payers interfere with our decisions, and health institutions use 3rd party payers and "standard of care" as an excuse/abuse to attempt to wield control over patients and their caregivers, even in the face of grim object reality. Trends in insurance, regulation and government indicate that this problem will get worse before better.

Being knowledgeable about end of life issues and medical options is a powerful tool for a person. It is so important to have lifelong and ongoing planning about financial matters (will, trusts, deeds, etc) and medical choices (medical power of attorney, etc), and to get the paperwork in order ... especially when there is a serious illness involved. Even with all that done, there can be times when "cost" comes between a patient and care. For patients who have a strong advocate, that can help shift the direction of care. But what about folks who are "on their own", sick, and without a supportive advocate on hand?

[livingbyfaith]

3rd party payers interfere with our decisions, and health institutions use 3rd party payers and "standard of care" as an excuse/abuse to attempt to wield control over patients and their caregivers, even in the face of grim object reality. Trends in insurance, regulation and government indicate that this problem will get worse before better.

Wondering how we can fight this, tv news station or some type of suit. I am thoroughly disgusted with what is happening. Any suggestions would be appreciated, someone suggested State Rep. They should be forced to give a disclosure before they can do this.

[Laurettas]

I have been wondering, livingbyfaith, if a place to start might be hospice itself. I don't know who determines their parameters for care but they deal with many of the dying.

Also, I have been thinking that we might begin pushing in our local hospitals for a space for those who are dying and their families. Not everyone should be home during that time and not everyone has someone capable of doing all of the care necessary for those who are dying. It seems reasonable to me that there could be a few rooms in every hospital for they dying that has the space for family members to stay and assist, to the degree possible, with the care of the dying person.

[livingbyfaith]

My problem is with the hospitals deciding who needs to go on hospice and when. Hospice was fine once we used them, my problem is the attitude at the hospitals that nothing more can be done go on hospice, at that point nothing more will be done. What if a cure is found that week, the patient will never know. There should be some type of disclosure when they start pushing this. I need to know how to get this done, any direction would be appreciated. I don't want another person to go thru what we went thru.

[Laurettas]

I know what you mean about full disclosure. When we were first discussing hospice with their representative, we were told something that I later asked another hospice person about. She said that we shouldn't have been told that particular piece of information "yet". That really upset me. We should be told everything that signing up for hospice means for the patient and not learn as we go. Felt like they were trying to con us into signing up.

[so-scared]

This thread kind of scares me.

[livingbyfaith]

Just had another friend told last week cancer free, this week after pet said numerous tumors on back spread from cervical cancer and that there is no more they can do. Sounds so familiar, I told her change hospitals and quick. This is getting old quick.