Home With Terminal Illness
By Michael Appleton M.D.
There are different kinds of pain. Physical pain is a warning that something is wrong with the body. Although we'd like to withdraw---and avoid---pain, it forces us to pay attention to the area that hurts. This makes a lot of sense, since the part that hurts is likely to be the source of the problem, and most of the time we can fix it and make it go away.
However, treating physical pain of terminal illness requires a few steps. If it's something we can't eliminate [such as pain from invasive cancer,] then we must treat the problem, that is the pain itself. This is called palliative treatment. It deals with the symptoms and not the cause.
Secondly, is the need to use enough medication to suppress the pain so the person can function. So forget all the old myths about morphine and narcotics addiction, and about how pain builds character. These myths are a bunch of rubbish.
Pain is a destroyer, and only when pain is relieved---whatever the cause---can we address the other painful things associated with the ending of life. Only when physical pain is gone can we deal with the spiritual pain, emotional pain, social pain, and financial pain that comes with dying. These kinds of pain must be relieved to allow the necessary closure of the dying process. Perhaps a more positive way to look at this problem is to say that when physical pain is relieved, there is opportunity for emotional and spiritual growth at the end of life. Physical pain stands in the way of sorting out these other, important problems.
Dying is not "an event"; it is a gradual unfolding of very complicated and intertwined process. It'll take the best efforts of everyone involved for it to proceed to a peaceful end. Severe physical pain doesn't have a place in this process.
These more complex pains can't always be comfortably resolved, and there may be no specific drugs to relieve them [except those that relieve anxiety and depression.]
When you're talking to the person about pain, you need to discover the location and severity---just how bad is it?
For practical purposes, divide pain into mild, moderate, and severe or Level I, II, and III.
Class I pain can be treated with many drugs. Advil, aspirin, Tylenol, Darvon, Darvocet, and the like usually provide relief.
Class II will need stronger drugs that have an opiate as one of the ingredients. Tylenol with codeine, Percodan, Percocet, and Vicodin are the common examples. These drugs are usually a combination of several drugs and may require a special prescription because of the federal law regulating controlled substances.
Class III pain almost always require a strong narcotic such as morphine or Dilaudid.
Physicians who don't have a lot of experience with pain management---particularly helping to relieve pain in dying patients---tend to underprescribe or ration strong pain medications. This is usually because of unwarranted fears of addiction, substance abuse, potential for overdose or fear of scrutiny by the Drug Enforcement Administration [DEA]. Doctors inexperienced with pain management also prescribe lower than effective doses simply because of their lack of experience with the pain suffered by the dying patient.
There are situations where the doctor may begin early using small amounts of a potent drug to help mild pain. This is probably a wise move, since the patient may need to have the dosage slowly ramped up as pain worsens. An increase in pain doesn't mean that the disease is getting worse or that the end is near. There is no upper limit to the dose of drugs such as morphine---so discuss with the doctor the need to use a dosage strong enough to relieve the pain, for as long as it's needed. Most patients will get relief from medication given by mouth---medication by injection is painful, irritating and not necessarily more effective.
Dying is both a complex and yet paradoxically simple process. Understanding the diverse nature of human beings, and dealing with all the facets of the dying person's life, make the end of life the final stage of growth.
Remember: Pain is subjective---if the person says they hurt, believe them.
Terminally ill patients have the right to expect good pain control. Patients should not have to "earn" their morphine.
Suffering in the presence of effective pain-relieving medications is inexcusable!
Pain is caused by stimulation of receptor nerve endings in the body that transmit impulses to the brain. Pain notifies the brain that something is wrong. When we notice an uncomfortable senation, we try to withdraw from it. When we can't withdraw or remove the source of pain, we try to alleviate it with medications such as aspirins, etc.
Suffering is more than just a response to pain---it's the enduring, the tolerating, or the bearing of pain. Suffering means all the unpleasant stuff that comes with pain, such as fear, anxiety, and fatigue.
I think of pain as a chain link. The first link is pain itself, the actual feeling of hurt. The next link is suffering the pain, if it can't be made to go away. The final link is anguish---when the pain becomes more than the person can bear. Anguish can deeply threaten the quality of the person's life. It's much more than an annoyance; it is when pain becomes the only thing the person can be concerned with.
Enduring pain and experiencing suffering and anguish are unnecessary. They also waste valuable time---something in short supply at the end of life. We should do anything we can to control pain and maximize the patients ability to experience fully the remainder of life.
Remember: Pain does not build character. Suffering is not a saintly virtue.
Physical Signs Of Death
We can't exactly predict exactly when death will occur. There are some signs you can use to determine if the end of life is near. The patient may withdraw, be inattentive, and express no interest or response to stimuli. The patient may sleep more or even fall abruptly asleep. Many patients refuse food and fluids in the weeks or days before death. If the patients body is still responsive to irritants, body temperature may elevate from infections or due to cancer. Closer to death, the patients body temperature might not be as reactive, and may even drop.
Blood pressure falls and urinary output decreases before death. The patient's pulse may slow, but most of the time, it becomes rapid, thready, and sometimes irregular. The dying person's skin may become clammy, and it can turn waxy-looking and bluish. The nailbeds may develop a dusky color [a sign of low blood pressure, slow circulation, and less oxygenation in the lungs.]
If the patient's breathing is impaired, he or she may appear flushed from the accumulation of carbon dioxide in the lungs. Few of these signs require treatment.
Deep and rapid breathing alternating with times of no breathing [Cheyne-Stokes respiration] is common. Observers may find this worrisome---particularly when breathing stops. The so-called "death- rattle" that we see in the hours before the end isn't always present. You can reduce it by administering medications, avoiding excess hydration, and not forcing fluids on the patient. Sometimes it's hard to remove the secretions that gurgle in the patient's airway, since they're usually beyond the reach of most suction devices. The "rattle" is probably more distressing and annoying to the caregivers than to the patient.
Days to hours before the end, patients may become less responsive and slip into a coma from which they cannot be roused. Moaning during this time doesn't mean that the patient is in pain. Also at this point the amount of pain medication can be reduced.
Patients may become agitated and restless, hallucinate, change their breathing patterns, and may lie with eyes open while not appearing to see. As the end approaches, the skin can become mottled or blotchy.
Reassurance, touching, talking, and comforting should be extremely helpful [to both the caregiver and the patient] during these final moments.
Few people have been present at the moment when life ceases. This is defined medically when major vital functions stop, and death can be officially pronounced. In most cases, death is the peaceful end of a struggle---a letting go into a gentle rest. It resembles the sleep of a newborn after the rigors of birth.
People don't die as dramatically in the real world as they do in the movies. There's nothing other-worldly about the transition from dying to death. With the best preparation, the moment of death may come as a shock---but it's manageable. We get through it. It seems as if our fears are always worse than reality, and our ability to cope greater than expected.
For many people, it's important to be present at the exact moment of death though in reality that is not always possible. And it is not uncommon as well for caregivers to express fear as the time of death approaches. Although you may not feel this way in the days prior to a loved one's death, helping to ease the path of the dying---and being there at the final moments---can be one of the most meaningful, rewarding things you will experience.
The mark of your ignorance is the depth of your belief in injustice and tragedy.
What the caterpillar calls the end of the world the master calls a butterfly.
----"Illusions" by Richard Bach
(c) copyright 1997
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