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You don't have to Die in Pain
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
I was leaving the house after admitting my new patient, a seventy-year-old gentleman. His son, Robert, was outside, pacing up and down the driveway puffing furiously on a cigarette. Something was clearly wrong, so I went over to talk.
“Robert, I know this was a long visit with lots of paperwork to be reviewed and signed, and I’m sure you’re tired of listening to me. I get tired of listening to myself!” No smile from Robert. “It’s a lot to digest in one visit, but you seem angry. I wonder if you have any particular concerns or input that would be helpful to me as I get to know your father and your family.”
“Well, since you asked, I think a lot of what you said in there is a bunch of hooey!” he snapped.
“Help me understand what doesn’t make sense to you.”
“Listen,” he replied, “you can’t pull the wool over my eyes with this ‘being free of pain’ stuff. I’ve heard enough about cancer from my friends and relatives. You get sick and have some pain. Then you get sicker and have a lot of pain. Then you die in horrible pain. That’s the deal. That’s the way it works!
“And I saw what happened in the hospital. All Dad did was stare at the clock, waiting for three hours to pass so he could have his next pain shot.”
No wonder he’s so angry, I thought. “How awful that must have been for you to watch,” I said. “But I promise that won’t happen here at home. We do things differently, and our plan does not include watching the clock. We will have plenty of medication available to him right here in the house, and I will show you and your mother how to give him what he needs for comfort, as often as he needs it, and as much as it takes.” Robert was looking at me with skepticism.
“All I ask is that you write down everything you’re giving, how much, and when,” I went on. “I’ll set up a medication sheet to make it easy for you both. And don’t forget— if you have questions or concerns, or if he’s not getting comfortable quickly enough, a nurse is just a phone call away twenty-four hours a day. We can change what we’re doing in the middle of the night if that’s what he needs,” I assured Robert. “My job is to have everything here that you might need, before you need it.
“The information you or your mom writes down about the intensity and frequency of his pain will help me identify how much medication he needs. It’s like justice with her scales— we need to balance the amount of pain with the right amount of medication to cancel it out. I will calculate how much medication he needs in the next twenty-four-hour period and then figure out the least intrusive way to medicate him. For example, instead of using lower-dose pills every two hours, we might prescribe a stronger, time-release capsule once or twice a day, or a skin patch with concentrated medication that lasts seventy-two hours.” Robert’s eyebrows rose slightly.
“It’s depressing to have someone come at you with medication often during the day,” I explained. “It reminds you too many times that you’re sick and relying on drugs. That wounds the spirit and upsets most people. So we try to get away from medicating so often.”
Robert was now leaning toward me, squinting slightly, and nodding thoughtfully. It seemed he was following my explanations.
“Give me two or three days and I promise you that not only will I have his pain controlled, but I will also fix his constipation and have him sleeping better at night. I promise! If not, you can fire me and ask for another nurse; maybe you’ll get a younger, prettier one.” Now he grinned.
At that moment we became a working team. Believe me, much can be accomplished in driveways.
There are many reasons why terminally ill patients or their families may not seek out the best professional help to manage pain. They may believe that pain is an unavoidable symptom of dying. They may hate taking pills. They may think (mistakenly) that every doctor has been trained to treat pain, or that all pain is alike. They may fear doctors or hospitals, or a language barrier may keep them from communicating easily in such a setting. They may not have insurance coverage. They may have well-intentioned home remedies that simply do not work or that are inappropriate for the patient’s particular needs. They may fear becoming addicted to pain-control medications such as morphine despite the fact that in good palliative care, such drugs are effective and safe. Finally, they may avoid getting relief because according to their cultural or spiritual beliefs, suffering has merit.
Pain has long been undertreated in this country. This has not been because of a lack of concern or compassion, but rather because pain was not adequately understood or taught to physicians. According to the Journal of the American Medical Association, only about 3 percent of all medical schools in the United States require a separate comprehensive course in pain control, and only 20 percent teach a course on death and dying— despite the fact that every single patient of every doctor will die.
We are now learning that inadequately assessed and under-treated pain not only leads to needless suffering but also carries a high price in lost productivity and increased health care costs.
However, things are changing because of hospice and the relatively new medical specialty called palliative care. These have put the focus on understanding the origins and progression of pain, new and innovative ways to control it, and better management of other symptoms of discomfort. Many hospitals now have pain clinics or palliative care teams available to consult with a patient’s physician. Hospice and palliative care physicians have extensive training in the management and control of all types of pain and other distressing symptoms. They are the experts.
Pain warns us that something inside our body is going wrong and needs attention. There are many reasons why a dying person may feel pain, including:
· Chronic injuries or illnesses such as arthritis
· Pressure caused by growths or tumors
· Organ secretions, such as the gastric acid that causes heartburn and ulcers
· Cancer that has spread to the bones or nerves
· Heat from fever
· Side effects from treatments, such as chemotherapy and radiation
· Pressure sores (bedsores) from inactivity and poor nutrition
But it’s also important to pay attention to nonphysical factors such as stress, fear, and anxiety. Our spiritual, emotional, and personal lives have a profound effect on our bodies as well as our minds. Sometimes pain is the physical manifestation of emotional or spiritual stresses. That is why the hospice interdisciplinary team approach to comfort care has been so incredibly successful.
When people are allowed to suffer with pain and other discomforts, losses spread to every part of their lives. They will experience loss of pleasure in living, loss of participation in family life, loss of appetite contributing to excessive weight loss, loss of sleep, and loss of hope. They suffer from depression and from the distress they see in family members who feel helpless to relieve their suffering. All of this damage is now avoidable with simple, readily available treatments.
The key to pain control is to identify its source. The words that patients use to describe their pain often point to its origin. For example, “constant ache” usually signals organ or soft tissue pain. A complaint that “it increases when I move” makes bone or joint pain a possible suspect. “It increases when I take a breath” most often indicates lung or pleurisy pain. “Pins and needles,” “burning,” or “stabbing” is typical of nerve pain. And a patient who speaks of “cramps or spasms” probably has muscle pain or spasmodic pain from an internal blockage such as a kidney stone or extreme constipation.
There is no single medication that will provide relief for all types of pain. Doctors who have not been trained in pain control often have a favorite, relatively mild narcotic, such as Tylenol #3 or Percocet, which they give for all pain. These are good and effective medications that address specific symptoms, but when used inappropriately, they will constipate and possibly sedate the patient without giving adequate pain relief.
My intention here is not to blame physicians. In addition to inadequate training in pain control, they often are fearful of being accused of improperly dispensing narcotics and being reprimanded or stripped of their license to practice by the state medical board. So it is understandable that they are reluctant to prescribe more than a small amount of these legally controlled drugs. The answer is to seek care from doctors trained in hospice and palliative care. They are recognized experts in properly prescribing and monitoring controlled drugs, and medical boards know that their patients have unusual problems with pain control, often requiring more medication than is usually prescribed.
Different medications are effective for different types of pain. For example, the family of medications called nonsteroidal anti-inflammatory drugs (NSAIDs), such as Motrin (ibuprofen) or Aleve (naproxen), may be more effective for bone pain than a narcotic such as morphine. Nerve pain may respond better to certain antiseizure medications or antidepressants than to narcotics. And since many patients experience more than one type of pain at a time, medications are often combined. One medication may also be used to potentiate (strengthen the effects of ) another.
Medication timing is another important area. Some drugs are used on what is known as a “p.r.n.” or “as-needed” basis, when the problem occurs. Others, particularly long-acting or time-release medications, must be given on a regular schedule to provide continuous, effective relief. For the most part, if pain is constant, medication should be given regularly before the pain is experienced, and then continued even after the pain is relieved to prevent its recurrence. The earlier the pain is treated, the more easily it can be controlled. It is unnecessary and counterproductive to make people in pain “watch the clock” until the next scheduled dose. And by hospice standards of care, it is also cruel.
Being able to swallow is not a requirement for achieving good pain control. Drops of pain medication can be put under the tongue (as can medications for nausea, shortness of breath, insomnia, anxiety, and so on). Certain medications are given through skin patches or ointments, or rectally, in suppository form. Still others are inhaled. Medications can also be continuously given through a fine, tiny needle under the skin that needs to be changed only every few days. And with the advent of central venous access devices, which are surgically implanted intravenous catheters or tubes, giving medication by IV is simplified enough to be managed by family caregivers at home. All of these methods can be used even if the patient is unconscious.
I have treated many, many hospice patients who, because of good pain and symptom control, lived much longer than their prognosis and were able to use that extra time to achieve some important last goals. Seek out the experts; the help is there. I want all my patients and their caregivers to enjoy their time together for as long, and as comfortably, as possible!
THE BOTTOM LINE
With hospice and palliative care available in today’s world, you don’t have to die in pain or with other suffering. [56-62]
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