Are you caring for a loved one at the end of life? There are many complicated decisions to be made at this difficult time, not made easier by the emotions you also struggle with. As a registered dietitian certified in nutrition support, I have worked with many families to educate them about the facts of nutrition support. I hope I can make things more clear for you today.
First, it is absolutely essential that you have a consensus of the prognosis from your medical team and that you have it in no uncertain terms. If the doctors are not in agreement or are not making clear to you whether there is some chance of recovery, you'll need to get that information before you can begin to make any decisions. No one wants to wonder what they would have done differently if only they had been given different facts. Then you have to accept what you are told in order to move ahead. Start to talk with other close family members about what is best for the patient.
Second, consider whether or not there is a living will. If a person clearly made his intentions known when he was feeling well and of sound mind, you can support that decision without guilt, knowing that you are carrying out their wishes. If they stated they want no artificial means of support when it is clear they have no chance of recovery, there isn't really another way to interpret that. You are not, in fact, making a decision on their behalf, but following through on what they made clear they wanted
Third, know there are many studies showing that a person at the end of life is not suffering from hunger, or from thirst, when feedings and hydration are withheld. There are chemicals their body produces to limit pain and suffering, and most likely the doctor will have them on something like morphine which will also abate the discomfort.
Fourth, decide what your objective is if you are thinking about providing nutritional support. Are you trying to prolong the person's life? Keep them comfortable? Hope they recover after a while despite what the doctors are all telling you?
Once you have accepted that your loved one has indeed come to the end of life, then you can go about deciding what is best for them.
Keep in mind there is a fine line between prolonging life and prolonging death. If death is indeed imminent, providing nutrition and/or hydration will not make the person better in any way--it may just keep their heart beating a few more days. Who will this serve? Is the person still awake and alert and enjoying conversations with visitors? Or are they in and out of consciousness and moaning when they are awake?
Some types of nutrition support involve procedures which may be uncomfortable or increase the risk of infections and complications. If a person's digestive tract is not working and they need to have intravenous tubes placed into a large vein for feeding, this can lead to more discomfort, even if just from the frequent blood tests that are required to manage this type of nutrition. How will this benefit them in their final days?
During this trying time, looking at objective facts could be most helpful. Ask yourself what your loved one would have wanted, based on conversations you've had in the past. Ask your medical team how the outcome will be different a week or two from now depending on the decision you make. Sometimes it will make no difference whether or not a person is fed, and sometimes it is not even a possibility to feed, if they are so severely ill that their system is not able to digest and distribute nutrients.
Take the time to discuss the facts with the medical team and with other family members. Be clear on what you want to accomplish by considering nutritional support. Try to come to a decision in less than five days, as situations can change week to week. And finally, have faith, from now on, that you made the decisions you made based on the knowledge you had at the time, and that your loved one is appreciating you for taking your time and putting your thoughts into caring for them as best as you could.
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