Home With Terminal Illness
By Michael Appleton M.D.
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Nutrition is vital in people recovering from illness and expected to regain their health. Providing food, liquids, vitamins supplements, and increased calories is necessary for a person's recovery.
But in terminal illness, people aren't usually expected to recover, and the regimen of vitamins and food is wasted and ineffective. Many people will lose their appetite and drop weight. The rule of thumb is "don't force-feed a person," though caregivers sometimes insist that the person eat hoping that doing so will restore the person's health. The only thing that's really getting fed here is the caregiver's denial.
Remember: The purpose of food in terminal illness is enjoyment, not nutrition.
Usually the terminally ill person's sense of taste will diminish and at that point, most people will reject food. I know it is hard to watch a loved one wither and refuse food or drink, but lack of appetite is part of the natural winding-down of the body at the end of life. The discomfort that comes with involuntary starvation or food deprivation does not accompany this natural process. Allow the person to decide whether or not he or she wishes to eat and respect their wishes. It'll be a tough thing to do, but it's the right thing to do.
Withholding Food and Fluids
Not feeding and not providing fluid to a dying person who doesn't want food or drink [or for who forced feeding isn't useful] is not the same as withholding food or fluids in people who are hungry and thirsty. It isn't starvation as we usually define it.
Most dying people do not experience discomfort if they don't eat or drink. Forcing food and fluids can make them uncomfortable.
Part of the dying process is the loss of interest in drinking or taking nourishment. Some of the food supplements designed to provide calories and nourish the sick don't taste good, and the aftertaste they leave isn't the most desirable thing to have lingering in your mouth at the end of life.
When people ask me what food I suggest they offer a dying person, I say, "junk food". That's because I like candy bars and ice cream. So that's my suggestion, if that's what the person wants, or has a taste for, whatever time of day it is, if the person requests it, then provide the requested food.
I know it's tough to observe a loved one slipping away and not be tempted to "just give them a little something". But that little something is more for our benefit than it is for the loved ones. Family caregivers and professionals alike have a great deal of difficulty doing nothing and because of this, we feel helpless. Keeping busy keeps us from our feeling, it uses up time. It's okay to do something---in caring for the dying and there's always something to do---but pushing food and fluids isn't one of them.
The confusion arises when dehydration and starvation are used as buzzwords to imply that the person is receiving poor care. This idea causes people to be inappropriately treated with I.V. fluids, nasogastric tubes, and gastrostomy feedings. The reason behind the treatment isn't to better the person---it's to relieve the guilt of the caregiver. What's important, is that life should be allowed to come to an end comfortably.
Force feeding is a waste of resources and serves only to prolong dying. Never forget that you should get competent medical and legal advice before starting [or discontinuing] any treatment.
And always remember the most important thing: Respect the wishes of the dying person.
We are talking about, after all, your loved ones life---and death...not your own.
We use tubes for feeding and to provide fluids. They can be intravenous or subcutaneous infusion lines, or they might be nasogastric or gastrostomy [directly into the stomach] feeding tubes.
Feeding and hydration tubes are useful when the person might recover---or if they might increase the person's life span and the quality of the remaining days. If the only function of the tubes is to prolong the dying process [and keep us from appearing negligent], don't use them.
Although outsiders may think that removing or not implementing a feeding [or other tube] is improper, we know better. Of course, you should consider all the legal and ethical issues prior to discontinuing this form of life support. You can avoid this touchy issue if you clearly examine the reason for using feeding and other tubes before they've been implemented.
Medications that a person needed before, may become unnecessary during the final weeks and days of terminal illness. Some drugs have a narrow margin of safety. This means that there's only a small difference between a safe dose and a toxic dose. While a particular dose might be okay in a normal patient, the same dosage might be dangerous to a dying person.
In the case of older people and dying patients who have lost weight, you may want to discuss with the doctor the possibly of reducing the dosages [or in some cases stop administering] certain drugs. Review all medications frequently with the doctor. Discontinue drugs that aren't essential to the person's well being.
Drugs to alleviate blood pressure can lower the person's blood pressure to a dangerous level. Drugs that drop blood sugar in diabetics may cause hypoglycemia and severe side effects in people with reduced food intake and weight loss. A person who isn't eating and isn't taking in adequate fluids should probably stop diuretics and potassium supplements.
A good piece of advise when it comes to giving medications to a terminally ill person is: "When in doubt, leave it out."
One exception to the general rule about using smaller doses is the use of pain medication such as morphine. We expect that as the disease that causes pain progresses, so will the amount of morphine required to control the pain. Increased pain does not always indicate worsening of the disease, but it does require a prompt increase in pain medication. Sometimes people will require [and tolerate] huge doses of morphine. There shouldn't be an "upper limit" to the dosage. Discuss with the doctor the need to increase the dose progressively to match the need for pain control.
The goal is to keep the person comfortable and functional. There are times, however, when people are so unmanageable that heavy sedation is an acceptable option.
If the person finds it hard to swallow [as can be the case] a liquid medication by mouth or use of rectal suppositories can be administered. Pain can be relieved by sublinual [under the tongue] morphine that's absorbed through the membranes of the person's mouth and special adhesive patches containing opiates [any natural or synthetic drug similar to opium] will provide a continuous level of the drug as it is absorbed through the person's skin.
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