HOW TO PROTECT YOUR LOVED ONES FROM PAIN by Robert Sassone CHAPTER 1 HOW TO PROTECT YOUR LOVED ONES FROM PHYSICAL PAIN 1-1 What is pain? 1-2 Is some pain valuable? 1-3 What is the process by which we feel pain? 1-4 How should the physicians analyze the patient's pain? 1-5 What pain relieving tools are available? 1-6 How are pain relieving drugs used? 1-7 Do pain relieving drugs even more effective than morphine exist? 1-8 Without using injections, how can we relieve the pain of patients who cannot swallow? 1-9 How are pain relieving drugs misused? 1-10 How do pain relievers protect us from feeling pain? 1-11 What are some possible ways to stop the mechanism by which nerve pain sensing cells sense pain? 1-12 How can we interfere with the transmission of the pain signal from the cell to the brain? 1-13 Are we discovering more effective pain relievers? 1-14 How do aspirin and similar drugs work? 1-15 How do nerve blocks and local anesthesia control pain? 1-16 How do narcotics (opiates or opioids) like morphine stop pain? 1-17 How do epidurals control pain? 1-18 How are patients given more control over their pain medication? 1-19 How does Patient Controlled Anesthesia (PCA) control pain, promote healing and reduce medical bills? 1-20 How do methods like natural childbirth techniques control pain? 1-21 What can be done if the pain signal reaches the inner part of the brain? 1-22 Is severe physical pain the only major pain problem? 1-23 How good is pain management at preventing and stopping pain that could be prevented and stopped? 1-24 Why does the pain relief system break down for so many patients? 1-25 Why do physicians fail to relieve cancer pain? 1-26 Is relieving pain simply a matter of giving the patient enough of a sufficiently strong pain reliever such as morphine? 1-27 Is it necessary for sleep to be interrupted so the patient can be given pain relievers during the night hours? 1-28 Can we soon expect significant improvements in pain relief? 1-29 Can severe bone pain be controlled? 1-30 Can relatives of patients help hospitals prevent pain? 1-31 What is the best way to protect your loved ones from physical pain when they are injured, seriously ill or require surgery? 1-32 How does it feel when pain is controlled? 1-33 How many people must suffer unbearable pain before death? 1-34 Why do people put up with all this unnecessary pain? 1-35 How serious is pain? 1-36 Do animal studies give evidence that pain in and of itself needlessly causes harm to patients? 1-37 How does unnecessary pain kill by aggravating other problems? 1-38 Why does "as needed" prescribing cause unnecessary pain? 1-39 Is anything being done to remedy the situation where many patients needlessly suffer pain? 1-40 What are the most important AHCPR guidelines for pain control? 1-41 Is the last year of life usually so painful that dying earlier and quickly would be preferable? 1-1 What is pain? "Pain is a feeling of being hurt; suffering". (DF) "A more or less localized sensation of discomfort, distress, or agony, resulting from the stimulation of specialized nerve endings." (DO) 1-2 Is some pain valuable? Yes. Pain can be a warning that the body is in danger of injury. It can signal a person to react promptly to remove a body part from a source of injury. Pain can also discourage movements that could otherwise injure the body. 1-3 What is the process by which we feel pain? Specialized nerve cells sense pain and transmit a pain signal along nerves to the spinal column. The spinal column then transmits the signal to the thalamus, the brain's pain sensing center, which then transmits pain signal to other parts of the brain. 1-4 How should the physician analyze the patient's pain? There is no instrument that measures pain. The physician observes and listens to the patient, (masculine includes both sexes) examining him and reviewing the patient's records as appropriate. The physician may order appropriate tests such as urine, blood and other body fluid tests, X-rays or other scans, etc. The physician may consult literature or a specialist, etc. In appropriate cases, the physician should ask appropriate questions such as: (a) Is the pain due to invasion of the soft tissues? (b) Is the pain due to nerve compression? (c) Is the pain due to distension of the liver by multiple secondaries? (d) Is the pain due to involvement of the bones, with an actual or threatened pathological fracture? (e) Is the pain due to some non-malignant complication of disease, such as abscess formation or some other infection? (f) Is the pain due to some complication of therapy, such as pain in a surgical incision, pain following radio-therapy, or gastric irritation caused by aspirin? In addition, the physician may ask questions of the patient such as: (g) Where does it hurt? (h) When did it start hurting? (i) Under what circumstances did it start hurting? (j) How has the pain changed? (k) How intense is the pain in the various places that hurt? (l) What type of pain is it? (m) Is the pain chronic or varying? (n) If the pain varies, how does it vary with time, change of conditions or location? (o) Does the pain radiate? (p) If the pain radiates, how does it radiate? (q) What makes the pain worse? (r) What relieves the pain? (s) What were the relevant circumstances which might have been related to the start or change of the pain? (t) How have relevant circumstances changed since the pain began? In response to appropriate answers, the physician may ask more specific questions in an effort to focus in as exactly as possible on the necessary details relating to the pain. If the pain persists and the physician has not explored the areas covered by the preceding questions, it may be evidence that the physician has not done all that he should have done to control the patient's pain. 1-5 What pain relieving tools are available? There are six primary tools for controlling pain: (a) Prevention, such as draining an area where the accumulation of fluid might otherwise cause pain, or removing an allergy causing substance, etc.; (b) non-medicine treatments such as change of diet; (c) mild pain relief medicines such as aspirin; (d) pain relief medicines stronger than aspirin but weaker than the morphine class, such as codeine; (e) the morphine class or even more effective pain relievers such as fentenyl; and (f) other techniques such as physical therapy, surgery, nerve blocks, electricity, etc., for control of certain pains. Sometimes combinations of pain relievers are more effective. 1-6 How are pain relieving drugs used? "A wide range of pain relieving drugs is available. It is appropriate to begin with well known mild analgesics such as aspirin or acetaminophen. There is an ever increasing number of other drugs which act in the same way as aspirin. These include indomethacin, ibuprofen, naproxen, and sulindac. They differ in duration of action and side effects, but basically all can provide effective relief of mild-to-moderate pain and are especially effective in providing relief of pain arising from bone and joint. "A more potent analgesic is represented by codeine, an opiate derivative. People often unnecessarily fear codeine because of its minimal ability to cause addiction. Its main problem, like all opiates, is that it may cause constipation. Often combined with acetaminophen it is an effective analgesic of moderate strength. "If more powerful analgesia is needed, and if it has been determined that the pain is likely to be responsive to opiates, there should be no hesitation in prescribing morphine. For relief of severe pain, morphine remains unexcelled although it is shrouded in myths which the medical profession embraces all too often. For example, 'I don't want to start you on morphine now, because if I do, when we really need it, it will have lost its effect;' or 'I'm afraid if I start you on morphine I may turn you into a drug addict.' "The fear of drug addiction in terminally ill patients would be laughable if it had not caused so many patients to endure needless pain. It is well documented that if morphine is taken for the relief of pain, habituation does not occur. Unless the disease advances, dosage requirements usually remain remarkably stable for many months, and if some other pain relieving procedure is initiated, such as a nerve block, morphine can be quite rapidly withdrawn without provoking the type of severe withdrawal seen in a true addict. "For patients able to take morphine by mouth, the best approach is to establish the dose which the patient needs to get relief by giving it either as an elixir or as tablets. The drug is of fairly brief duration and so should be given every four hours. It is wrong to give the drug only when the pain has broken through the effect of the previous dose. Once the total daily requirement has been established, the morphine can then be given in the same amount, using sustained release morphine tablets such as MS Contin. This controlled release preparation allows the patient to be dosed only twice a day instead of every four hours. This is major a boon, and if it did no more than allow undisturbed nights it would be an invaluable preparation. "In terms of dose, morphine is a very flexible drug. The rule is that as long as side effects allow it, the dose should be increased until pain relief is achieved. Pain in some way acts as a physiological antagonist to morphine so that respiratory depression does not occur even at very high doses. "For the patients who cannot take morphine by mouth, there are two alternatives. The first is to use a constant infusion syringe which pumps a morphine solution either into a vein or under the skin. Alternatively, in centers where the necessary skill exists to set it up, morphine can be infused into the space between the membranes surrounding the spinal cord, the epidural space, or directly into the cerebrospinal fluid around the spinal cord. Unusual activities, such as lying with the patch on a heating pad, may change the rate at which medicine passes into the body. Passing too much medicine too quickly could be dangerous". (PM) 1-7 Do pain relieving drugs more effective than morphine exist? Yes. For example, Dilaudid (hydromorphone), a semi-synthetic drug, which is usually given every four hours, and levorphamol are each about five times more effective than morphine as pain relievers. Fentenyl, a synthetic pain reliever, is about one hundred times more powerful in relieving pain than morphine and may be administered via an adhesive patch that is effective for three days. These new pain relievers are so strong that they should be used only under appropriate conditions. 1-8 Without using injections, how can we relieve the pain of patients who cannot swallow? Oral suppositories are very effective in certain cases. It is possible to place a small amount of pain relieving drug in the mouth, from where it can be absorbed into the body. Commercially available patches with fentenyl or similar pain relievers can be attached to the patient's skin. The pain reliever is released through a permeable membrane and absorbed through the patient's skin. One patch lasts about three days. The patient can shower or soak in a hot tub without effect on the patch. 1-9 How are pain relieving drugs misused? Most pain caused by misuse of pain relieving drugs involves administering too small a dose, by waiting until the patient is in severe pain before administering the pain relief drugs, or by failure to move on to the next more potent level of pain reliever. For example, aspirin is not sufficient for a codeine level pain, nor is codeine sufficient for a morphine level pain. The dosage instruction "as needed" also known as "when necessary" or "P.R.N." frequently fails to relieve pain. (LA106) Pain relief drugs can also be administered under inappropriate conditions, such as when powerful drugs are given for minor pains that could be controlled by weaker drugs, especially when the patient cannot be monitored, such as on an outpatient basis. 1-10 How do pain relievers protect us from feeling pain? Pain relieving drugs either stop the cause of the pain, such as swelling, or they interfere with the transmission of the pain signal from the nerve cell to the brain's pain sensing center. 1-11 What are some possible ways to stop the mechanism by which nerve pain sensing cells sense pain? One simple way is removal of the cause of pain. When you touch something hot, you feel pain, which prompts a reflex by which you immediately remove your hand from the hot object. If you feel pain because of an infected tooth, the tooth can be removed or filled. If you feel pain due to an infection, clearing up the infection removes the pain. If you feel pain caused by fluid build up, removal of the excess fluid often relieves the pain. When tension causes pain, it helps to remove the tension. Other examples are equally obvious. Another way is to interfere with the ability of the nerve pain sensing cell to detect pain stimuli or to transmit the signal indicating pain stimuli. A complex series of thousands of separate actions may be necessary for a cell to detect pain stimuli and transmit a signal. The cell may have to absorb at least one particular element such as calcium or emit or transmit something or move something from one part of the cell to another. We are now discovering these thousands of secrets of cells and putting them to use. For example, a substance derived from spider venom permits us to close the calcium channel into a cell which will help us improve pain control. (DI) 1-12 How can we interfere with the transmission of the pain signal from the cell to the brain? Think of pain as having to go through a series of gates before the brain feels it. If any of these gates can be closed, the pain will not get through. 1-13 Are we discovering more effective pain relievers? Yes. As our understanding of cells increases, we are finding and we will continue to find more and better ways to stop pain. For example, "Biochemists have isolated a pain killer from the skin of a poisonous frog from Equador that is 200 times stronger than morphine. An article in the British magazine New Scientist reported that the extract is from the frog Epipedobates Tricolor, traditionally used for poison arrows. Epibatin, as the drug is called, is dramatically different from other frog extracts, and researchers in Bethesda, MD., think it affects the nervous system in a way not yet understood." (RE) Additionally, the receptors and the binding brain molecules for both opium and marijuana have recently been discovered, promising vast improvements in pain control. (LT/SC) 1-14 How do aspirin and similar drugs work? "Aspirin, for example, acts to block pain at its origin, the specialized nerve cells in the skin and organs that sense pressure, injury, cold, heat and disease." (GH) 1-15 How do nerve blocks and local anesthesia control pain? "Local anesthesia, also called nerve blocks, quell pain signals along nerves running from the pain receptor cells to the spinal cord." (GH) 1-16 How do narcotics (opiates or opioids) like morphine stop pain? "Narcotics, like morphine, stop pain signals from running up the spinal cord and slam the door on them in the thalamus, the center that refers pain information to other parts of the brain where pain perception occurs. (GH) 1-17 How do epidurals control pain? "EPIDURAL ANESTHESIA, in which a small amount of morphine is infused around the spinal cord, has been a boon to patients because it blocks pain from racing up to the brain. And because there is no memory of pain, patients can move around earlier and avoid the debilitation associated with pain- induced immobility. Permanent epidural pumps are now being worn by patients with certain types of agonizing pain that does not respond to other treatment." (GH) 1-18 How are patients given more control over their pain medication? The first step is for doctors to be more sensitive to how their patients feel and to more effectively interview patients. A competent physician must know if the drug he is prescribing is failing to relieve the pain. He must not continue an ineffective pain relief treatment when better pain relief tools are available. In some cases, it is wise to give the patient near total control over the fine adjustment of pain killing medicine. After all, the patient knows best how the patient feels. If necessary, PCA (Patient Controlled Anesthesia) should be utilized. 1-19 How does Patient Controlled Anesthesia (PCA) control pain, promote healing and reduce medical bills? "PCA machines were set up throughout the (University of Chicago) hospital, enabling patients to push a button to give themselves doses of opiates whenever they wanted to subdue or avoid pain. Two out of three post-surgery patients now administer pain killers to themselves. "PCAs not only control pain, they promote faster recovery. One study showed that PCA patients were discharged 4.6 days earlier than patients receiving standard injections of pain killers administered by nurses. PCA patients saved an average of $1,735 on their hospital bills." (GH) 1-20 How do methods like natural childbirth techniques control pain? Emotional factors may aggravate suffering caused by pain. Concentrating on the pain, rather than on something else, increases pain intensity. A wounded soldier or an injured athlete may not feel much pain initially because he is concentrating on something else. Another factor that aggravates suffering from pain is the expectation that the pain will never end or will not end soon. Natural childbirth techniques diminish the suffering that childbirth would otherwise cause by focusing the mother's attention away from her pain. They give her duties to perform which distract her from concentrating on the pain and remind her that the pain is temporary and has a purpose. Additionally, the relaxation techniques of natural childbirth ease pain by reducing physical tension. This method is similar to the use of a hot water bottle to ease a stomach ache; the body concentrates on the warmth rather than the pain. 1-21 What can be done if the pain signal reaches the inner part of the brain? "Even these deep areas of the brain, where pain is finally felt, are no longer off limits to scientists intent upon subduing the ancient enemy. Some patients with severe, intractable pain are having tiny electrodes implanted into the pain reception areas of the brain. Another experimental approach uses an implantable pump to infuse small amounts of morphine into the brain." (GH) It should soon be possible to protect the brain from pain signals by taking advantage of the recently discovered opiate receptor in brain cells. (LT/SC) 1-22 Is severe physical pain the only major pain problem? Nonphysical pain is more subtle than physical pain and cannot be controlled by merely giving the patient the proper dose of the proper medicine. Seriously ill patients frequently need emotional support such as love, someone to converse with, or someone to talk to them even if they are unable to talk back. Please see chapter 2 for a discussion of nonphysical pain control. 1-23 How good is pain management at preventing and stopping pain that could be prevented and stopped? Pain relief is effective when the physician does his job well. Unfortunately, when the patient is in severe pain, the physician frequently does a poor job of pain relief. For example: "There is widespread recognition that patients with cancer frequently receive insufficient treatment for their pain." (JP) 1-24 Why does the pain relief system break down for so many patients? A physician must know how to treat various types of pain and he must know the types and intensities of pain afflicting his patient. Many physicians are deficient in either or both areas. Surveys have shown that there is often a great discrepancy between the intensity of pain the patient is feeling and the intensity of pain the care giver believes the patient is feeling. (PM) Because the patient too frequently is in greater pain than the care giver believes, the patient too frequently is given insufficient pain relief. This is the fault of the physician who does not take the time to become familiar with the patient's subjective symptoms and/or who does not take the time to become familiar with modern methods of pain treatment. 1-25 Why do physicians fail to relieve cancer pain? "Some of the most common reasons include failure to assess properly the etiology of cancer pain, under utilization of existing pain management techniques, and excessive fear of tolerance and addiction to the narcotic analgesics....Inadequate communication between health care providers and their patients about pain intensity could represent another major factor interfering with the provision of adequate pain control....Failure to appreciate the magnitude of the patient's pain is likely to result in inappropriate analgesic prescribing and administration." (PM) Many physicians do not take the necessary time to determine the cause and intensity of the pain with sufficient precision, and consequently fail to give the patient the medicine which would relieve the pain. 1-26 Is relieving pain simply a matter of giving the patient enough of a sufficiently strong pain reliever such as morphine? Generally, pain can be treated more effectively if the cause is first determined, because different medicines are effective in different ways. Most pain relief is not a complex problem. However, a patient can suffer from many different pains which each have different causes. For this reason, pain relief can be complex. Although morphine is a much stronger pain reliever than aspirin for many purposes, the way morphine works prevents it from stopping certain types of pain such as bone pain. Thus morphine alone might provide negligible pain relief for some pains that can be controlled effectively by a generally milder medicine such as aspirin plus morphine. 1-27 Is it necessary for sleep to be interrupted so the patient can be given pain relievers during the night hours? It is usually better to give a patient a long lasting pain reliever so he can sleep undisturbed all night long. For example, Naproxyn (Naprosyn) is an aspirin-like medicine that provides pain relief for 12 hours. Fentenyl can be given by a commercially available patch which lasts three days (72 hours). 1-28 Can we soon expect significant improvements in pain relief? Yes. Progress is being made faster than ever before in medicine. Until recently, morphine was the strongest pain reliever. Now we have drugs like fentenyl, which is about a hundred times more effective at relieving pain than morphine. This is just the beginning. The 1992 discoveries of the long sought opiate receptor in the brain and the natural brain molecule that binds to the marijuana receptor are major steps along the road to vastly improved pain control. (SC) We can expect substantial additional improvements in pain relief in the near future. 1-29 Can severe bone pain be controlled? Yes. Bone related and similar pains, for example, do not respond well to morphine. However, those pains which do not respond to morphine are controlled by other pain relief methods. Bone related pains are controlled by a combination of medicines and physical relief techniques. While the medicines that are used control pain in a manner analogous to aspirin, the physical techniques are designed to relieve the cause of the pain. A case of severe bone pain might be controlled by a combination of physical therapy, aspirin or hormonal type medicines, massage, etc., which might be used to partially relieve pain by removing part of its cause. Pain relief medicines such as morphine would then be given in sufficient quantity to control whatever pain remained. 1-30 Can relatives of patients help hospitals prevent pain? Yes. First make certain the patient is admitted to the best available hospital for treating his specific illnesses or injuries. A doctor who is not treating the patient, especially a doctor with a specialty near the type required for treating the patient, or some nurses, will be able to advise as to hospital reputations. A hospital possession of advanced equipment, such as MRI, may indicate a proficiency at treating a certain type of injury or illness. Even in more effective hospitals, information is not always communicated. Especially when a patient is transferred or patient's condition changes, the new shift of medical personnel may not be aware of relevant facts. Relatives can communicate these facts. For example, the medical staff may believe a patient cannot eat, but relatives can devote more time than the staff to assist the patient. Relatives can perhaps feed the patient and lovingly pause when the patient needs to rest during the meal, so that a patient apparently unable to eat can be fed. Nursing care is rationed in hospitals. Because there are too few nurses to assign one per patient, relatives who may be constantly beside the patient can immediately respond to his requests or pass them on to the nurses and, if appropriate, demand that they be fulfilled. Sometimes action must be taken promptly to increase its chances to be effective. The hospital schedule may preclude treating a patient at the optimum time. By demanding treatment or volunteering to assist, an attending relative may persuade the hospital to shift its schedule to benefit the patient without harming others. 1-31 What is the best way to protect your loved ones from physical pain when they are injured, seriously ill or require surgery? In most cases, the best way to protect your loved ones from physical pain when they are receiving medical care is to understand why experts tell us that all physical pain can be controlled and to follow the suggestions in this chapter. There are three levels of pain: (1) mild to medium pain; (2) serious pain; and (3) very severe pain. You can control mild to medium pain yourself with aspirin, acetominophen (tylenol), ibuprofen, etc. Your physician can frequently control serious pain with codein related pain relievers. For very severe pain, you may need a pain specialist in addition to your treating physician or even a group of pain specialists and special treatments or medicines such as fentenyl. Most people who suffer very severe pain have not yet consulted a pain specialist. Those suffering very severe pain have not received the medicines or treatment they need to control their pain and as a result have needlessly suffered very severe pain even though all physical pain can be controlled. Many people settle for inadequate pain relief because of unfounded or emotional fears. They may fear opiates because of incorrect information. Sometimes people postpone using the best pain relief medicines because they fear that the pain may become more intense later. Some want to show total faith in their non-pain specialist physician by denying even to themselves that they are sick enough to have severe pain. Physicians may also have emotional reasons for their unwillingness to consult with specialists. Again, all pain can be controlled. While many physicians control less severe pain fairly well, many do not take proper actions to control conditions causing very severe pain. The solution is to seek out a physician who will take reasonable steps to control your pain. This chapter will help you to select such a physician and to know when, how, and why to seek his assistance. 1-32 How does it feel when pain is controlled? "If pain is properly controlled, the patient will never feel it again. He will ask if the medicines are really necessary any more, because the pain has gone." (SA) (LA106) 1-33 How many people must suffer unbearable pain before death? None receiving good medical care! For more than 20 years, it has not been necessary to suffer unbearable pain before death. As pain comes and goes, it may take a short time before the pain is controlled. Knowledgeable doctors claim that all physical pain can be controlled. "A number of studies have shown, and this corresponds to my experience, that the majority of critically or terminally ill patients do not have pain and that those who do can be controlled by the judicious use of pain-killing medicines." (FO) In support of this testimony are statements of numerous doctors, including the founder of the modern hospice movement, Cicily Saunders, M.D. (SA), Richard Lammerton M.D., who assisted Saunders in founding the modern hospice movement (LA106), and many articles in medical journals such as The Journal of Pain and Symptom Management, Cancer, Pain, etc. (AN, JA, JP, PA, PS) The author believes that those who disagree are not well informed. 1-34 Why do people put up with all this unnecessary pain? People may not respect physicians in general, but they respect their own particular physician. Sometimes, they wrongly assume that he knows what he is doing in areas outside his specialty. The treatment of very severe pain has frequently been beyond the average physician's expertise and so has been treated very poorly. Most physicians were not properly taught pain management in medical school and experience frequently reinforces this deficiency. Patients who know someone who died painfully may believe their own pain cannot be controlled. 1-35 How serious is pain? Pain kills. Pain disables. "The dramatic difference pain control can make in preventing death and unnecessary illness was shown in two recent studies. "In one, scientists from the Massachusetts General Hospital reported in the January issue of the New England Journal of Medicine that of 30 infants given deep anesthesia (greater than average pain relief) during open heart surgery and post operative pain relief, none died. Among 15 other infants given routine analgesia (average pain relief) during the same type of surgery, four died. "Stress hormones released in response to pain damaged the infants' hearts, depleted their immunity and caused other deleterious changes, says Dr. K.J.S. Anand, who headed the MGH research team. 'Deep anesthesia continued post-operatively may reduce the vulnerability of these neonates to complications and may reduce mortality.' he concluded. "In the second study, patients with sickle-cell disease, who are frequently hospitalized for pain, were switched from narcotic injections and fast acting pain pills to long lasting controlled-release morphine capsules. "One year after the switch, admissions for sickle-cell pain decreased 44%, hospital days dropped by 57% and emergency room visits fell by 67%, Dr. Daniel Brookoff of the University of Pennsylvania reported in the Annals of Internal Medicine." (2GH) 1-36 Do animal studies give evidence that pain in and of itself needlessly causes harm to patients? "Research in animals has convinced psychologist John Liebeskind of UCLA that patients pay a penalty for not having their pain stopped. Rats given standard anesthesia during a surgical procedure similar to an appendectomy had pain-related impaired-immune function and a rapid growth of transplanted tumors, he says. "Similar rats given adequate medication but who woke up pain-free after surgery did not experience a drop in their immune function nor an acceleration of tumor growth. "'The message is clear,' Liebeskind says. 'Pain can kill. It's not just some inconvenient thing...'" (2GH) 1-37 How does unnecessary pain kill by aggravating other problems? A human being needs to eat and needs reasonable amounts of exercise. Pain can make a person unable to eat, exercise, or effectively perform other necessary functions. Failure to perform these functions causes the body to deteriorate and risks causing death by some factor that would not occur if the person had not been weakened by pain. 1-38 Why does "as needed" prescribing cause unnecessary pain? "What must be avoided is the giving of analgesics 'when necessary'." (LA106) Lammerton describes how delays, giving of too little pain reliever and other problems cause many patients to suffer greatly when the "when necessary" or "as needed" pain relief concept is used or, as is inevitable, misused. (LA106) "Over the years, clinical surveys have continued to show that routine orders for intra-muscular injections of opioid 'as needed'-the standard of care in nearly all clinical settings-result in unrelieved pain in nearly half of the 23 million patients who have surgery each year. For example, in a 1987 study, 203 of 353 medical-surgical patients reported experiencing severe pain during their hospitalization (PA). Fewer than half of the patients with pain had a member of the health care team ask them about their pain or note it in the patient's medical record. The dose of analgesic administered over a 24-hour period was judged to be inadequate, and total pain relief was only reported by 35% of the patients. In 1969, Oden concluded that 'while traditional intra-muscular dosing of analgesics as necessary is simple and inexpensive, it falls short of the mark in effectively achieving control of acute pain'" (AN). "Studies reveal that traditional treatment will leave the patient in pain more often than not and may lead to shallow breathing and cough suppression in an attempt to 'splint' the injured site. Retained pulmonary secretions and pneumonia may follow. Unreleaved pain may also delay the return of normal gastric and bowel function in post-operative patients." (JA) 1-39 Is anything being done to remedy the situation where many patients needlessly suffer pain? "The (U.S. Government) Agency for Health Care Policy and Research (AHCPR) recently released a clinical practice guideline that provides recommendations for physicians, other health care providers, and consumers on appropriate and effective management of acute pain in adult and pediatric patients and in patients with special needs." (GH) 1-40 What are the most important AHCPR guidelines for pain control? "After an exhaustive review of the scientific evidence, a public forum, and consultations with relevant organizations and experts in clinical practice, a guideline for acute pain management was developed, peer reviewed, and tested in practice settings. While not all acute pain can or should be eliminated, the panel found that several alternative approaches, when appropriately and attentively applied, adequately prevent or relieve pain. These alternative approaches are incorporated in the guideline. "The guideline also recognizes that patients have variable medical and surgical conditions, responses to pain and interventions, and personal preferences. It offers clinicians, therefore, a flexible approach to acute pain management. The guideline recommends a collaborative, interdisciplinary approach to pain control that includes all members of the health care team and input from the patient and the patient's family when appropriate. Whenever possible (ie., for scheduled operations and procedures), an individualized pain control plan should be developed and agreed on pre-operatively by patients and practitioners. Assessment and frequent reassessment are critical to successful management of acute pain, and the patient's self-report should be the principal barometer of pain intensity and relief. Special efforts should be made to elicit accurate pain reports from children, non-English speaking patients, and others who may have difficulty communicating their pain. "The guideline also includes the following recommendations: "* Early intervention to control pain before it becomes established, including treatment before, during, and after surgery; "* Aggressive use of both pharmacologic and non-pharmacologic therapies to control and/or prevent pain; "* Use of non-pharmacologic interventions, including education, relaxation, distraction, imagery, massage, application of heat or cold packs, electro- analgesia, and other means that can reduce the need for drugs for mild pain and enhance pharmacologic treatment of moderate to severe pain; "* Pharmacologic treatment administered around the clock, rather than as needed; "* Careful monitoring (patient self-reports, behavioral, and physiological evaluations) every 2 hours while awake for 24 hours after surgery; "* Patient-controlled analgesia, when available and judged appropriate by the clinician; "* Use of non-opioids (acetaminophen and non-steroidal anti-inflammatory drugs), either alone or with opioids, to control mild to moderate pain; "* Use of opioids (eg., morphine, codeine) for moderate to severe pain; "* Intravenous administration of opioids when oral intake is problematic; "* Spinal analgesia (epidural opioid and/or local anesthesia); "* Neural blockage with regional (injected and topical) anesthetics; "* Other agents, such as nitrous oxide and ketamine hydrochloride, when trained personnel and appropriate monitoring are available; "* Development of an institutional quality assurance/education program to monitor the provision of effective pain relief. "The guideline includes recommendations for infants, children, and adolescents; elderly patients; patients with alcohol or other drug abuse problems; and other patients with special needs (including obstetric patients and those who have procedures outside of the operating room). It also includes procedures for site-specific pain control, analgesic dosage tables for adults and children, sample pain assessment tools, examples of non-pharmacologic interventions, and pre-operative and post-operative pain management flow charts." (GH) 1-41 Is the last year of life usually so painful that dying earlier and quickly would be preferable? Not according to the only two studies the author has been able to find. "In one study, researchers at the Philadelphia Geriatric Center analyzed the last year of life of 200 elderly persons living outside nursing homes. They found that 82% had a majority of 'high-quality' months, one in four never or seldom experienced pain, and two out of three were mentally alert most or all of the time. In the other study, the Federal National Institute on Aging studied the cases of more than 1,200 elderly persons who died in Fairfield County, Conn. in 1984-1985. They found that 80% had 'no difficulty with orientation or recognizing family as late as one month before death', more than half died in their sleep, almost a quarter were in good or excellent health a month before death-52% could breathe freely, 61% had no pain and 69% were not taking pain medication." (CO) REFERENCES (AN) Anesthesiol Clin. North Am. 1989; 1-15 (CO) Columbia Magazine Jan. 1992, p5 (DF) World Book Dictionary (1987) Definition of pain, p1495 (DI) Discovery Magazine 6/91, p52 (DO) Dorland's Illustrated Medical Dictionary 23rd edition (FO) Lawrence V. Foye, MD, Director of Education Services of Veterans Administration, formerly with National Cancer Institute, testimony before U.S. Senate Special Committee on Aging, 7 Aug. 1972 (GH) The Good Health Magazine 26 Apr. 1992, p12 et seq. "The Big Hurt" by Ronald Kotulak (JA) Journal of Am. Med. Association 20 May 1992 V267 #19 p2580 (JP) "Correlation of Patient and Care Giver Ratings of Cancer Pain" Vol. 6 No. 2 Journal of Pain and Symptom Management, Feb. 1991 p53 (LA) Care of the Dying Richard Lammerton, M.D. (1975) reprinted with permission of U.K. publisher by LIFE 900 N Broadway, #725, Santa Ana, CA 92701 p106 (PM) "Pain Management" by Matthew E Conolly, MD, Associate Professor of Medicine and Pharmocology, UCLA, Issues in Law & Medicine, Vol 4 No. 4, p500 (1989) (PA) Pain 1987; 30:69-78 (PS) "Correlation of Patient and Care Giver Ratings of Cancer Pain" Journal of Pain and Symptom Management, Feb. 1991, Vol. 6 No.2 p53 (RE) Orange County, CA Register 18 June 1992 pB6 (SA Sanders, C.M. "Treatment of Intractable Pain in Terminal Cancer" Proceedings of Royal Society of Medicine, 1963, vol. 56, p191 (SC) "Cloning of a Delta Opioid Receptor by Functional Expression" Evans, et al. Science 12/18/92, p1952-1955, related articles 1882-1884, 1946-1948 Chapter 2 HOW TO PROTECT YOUR LOVED ONES FROM NONPHYSICAL PAIN 2-1 What is depression? 2-2 What causes depression? 2-3 What is the solution for depression? 2-4 What are the major anti-depressant medications? 2-5 Why are ill and terminally ill patients more prone to depression? 2-6 What is the leading cause of depression in terminally ill patients? 2-7 How is depression in an ill or terminal patient best controlled? 2-8 How are chemically caused depressions controlled? 2-9 How many American adults suffer from depression? 2-10 Do many terminally ill patients become depressed? 2-11 When are terminally ill patients most likely to be depressed? 2-12 What percentage of depressed terminally ill patients could have their depression relieved by appropriate treatment? 2-13 What percentage of depressed terminally ill patients actually are treated by measures designed to control their depression? 2-14 What should we do to relieve the depression of terminally ill loved ones? 2-1. What is depression? The term "depression" has two related meanings. A normal healthy person is subject to mood swings and becomes depressed at times, but this is not the type of depression psychiatrists discuss and treat. A person is said to be depressed when the depth or duration of the depressed condition exceeds that experienced by healthy people. Psychiatrists define depression as a mental disorder characterized by prolonged feelings of despair and dejection, often accompanied by fatigue, headaches, and other physical symptoms. (DF) Symptoms of depression include: "* Persistent sad, anxious, or 'empty' mood * Feelings of hopelessness, pessimism * Feelings of guilt, worthlessness, helplessness * Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex * Insomnia, early-morning awakening, or oversleeping * Appetite and/or weight loss or overeating and weight gain * Decreased energy, fatigue, being 'slowed down' * Thoughts of death or suicide; suicide attempts * Restlessness, irritability * Difficulty concentrating, remembering, making decisions * Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain". (NI) 2-2. What causes depression? Depression can result from physical, chemical, medical, emotional, or other causes, such as depressing events, or from any combination of causes. Depression can be caused by a body chemical imbalance. An imbalance can make a patient more susceptible to depression so that physical or emotional stress can trigger the onset of depression. Depression can also be caused by physical events, such as use of illegal drugs or severe or long-lasting pain. (Most patients do not know that most deaths are painless, and where there is pain, experts tell us it can always be controlled.) Depression can be caused by emotional events or by fear. Fear of one's now evident mortality can be significant during terminal illnesses. Depression can be caused by symptoms such as sleeplessness or inability to eat. "Some types of depression run in families, indicating that a biological vulnerability can be inherited....However it can also occur in people who have no family history of depression. Whether inherited or not, major depressive disorder is often associated with having too little or too much of certain neurochemicals. "Psychological makeup also plays a role in vulnerability to depression. People who have low self esteem, who consistently view themselves and the world with pessimism, or who are readily overwhelmed by stress are prone to depression. "A serious loss, chronic illness, difficult relationship, financial problem, or any unwelcome change in life patterns can also trigger a depressive episode. Very often, a combination of genetic, psychological, and environmental factors is involved in the onset of a depressive disorder." (NI) Causes of depression can add up. For example, a patient might be able to handle fear of disease, then lose control because of fear of abandonment. This makes loving compassionate medical care critically important, because it leaves fewer potential causes of depression to be born by the patient. It is the duty of a care giver to attempt to remove enough causes of depression so that the patient can handle what remains. Some diseases such as lyme disease which can be caused by a tick bite can cause depression. 2-3. What is the solution for depression? The solution for most serious depression is proper care. It involves finding the causes of the depression, whether medical, emotional, life style, or other causes, and then applying the appropriate known measures to prevent depression from continuing. In the same way, the depression of most ill people and most terminal patients can be controlled. Some hospice experts such as Lammerton have stated that the depression of all terminally ill patients can be controlled so that there need never be a request for euthanasia. (LA) 2-4 What are the major anti-depressant medications? Three groups of anti-depressant medications are most often used to treat depressive disorders: tricyclics, monoamine oxidase inhibitors (MAOIs), and lithium (manic depressive syndrome). (NI) Recent years have seen a vast increase in the number of available anti-depressant drugs, with many new drugs discovered that act on the brain to increase chemicals that otherwise are reduced during depressed episodes. 2-5 Why are ill and terminally ill patients more prone to depression? Since we would rather be healthy, illnesses and terminal conditions are depressing events. Physical changes such as weakness, chemical, medical and other changes associated with illness or a terminal condition can cause depression. 2-6 What is the leading cause of depression in terminally ill patients? The leading cause of depression in terminally ill patients is uncontrolled or improperly controlled pain. (LA) People can tolerate a substantial level of pain when they believe that the pain will be relieved, but if a patient loses hope that the pain will be controlled and believes, however wrongly, that the pain will never end, he may become severely depressed. This is unfortunate, especially since all physical pain can be controlled. (See chapter 1 for physical pain control.) Learning of a serious disease is the second leading cause of depression in terminal patients. The sudden replacement of the prospect of a healthy future with the expectation of imminent death accompanied by unknown complications from the terminal illness can result in an immediate intense depression. This depression is caused by inevitable comparisons such as: "I was healthy, but now I will never be healthy again. I have been relatively pain free, but now I may be facing increasing pain. I was free, but now I am going to be increasingly limited." While it is normal for a patient to be temporarily depressed when he learns he has a terminal illness, most patients adjust to the bad news and come out of the depression by focusing on the necessary things to be done and the remaining life to be lived. According to Richard Lammerton, M.D., who assisted Dr. Saunders in developing the modern hospice, a patient will always come out of the depression caused by learning he has a terminal condition, provided his pain is controlled and he receives reasonable emotional support. (LA) 2-7 How is depression in an ill or terminal patient best controlled? Depression in ill or terminal patients can best be controlled by determining the causes of the depression, and then eliminating or controlling them as much as possible. To control depression, hospice organizations have used the following strategy: (a) control the patient's pain; (b) provide the patient with loving emotional support, since troubles can be borne more easily if we feel loved; and (c) attempt to relieve any depression caused by chemical or medical problems by controlling those problems. (LA) 2-8 How are chemically caused depressions controlled? A number of drugs are now used to neutralize chemical imbalances that would otherwise cause depression. (NI) 2-9 How many American adults suffer from depression? "During any 6-month period, 9 million American adults suffer from a depressive illness." (NI) 2-10 Do many terminally ill patients become depressed? Most patients suffering a long terminal illness at some time may also suffer from at least mild depression. Sadly, depression in terminally ill patients is too seldom adequately diagnosed and treated. 2-11 When are terminally ill patients most likely to be depressed? Patients are most likely to be depressed shortly after first learning or suspecting that they have a terminal illness. In most cases, after a transition time, this initial depression diminishes or disappears. 2-12 What percentage of depressed terminally ill patients could have their depression relieved by appropriate treatment? Substantially all depressed terminally ill patients could receive substantial relief for their depression. (LA) 2-13 What percentage of depressed terminally ill patients actually are treated by measures designed to control their depression? Sadly, only a tiny percentage of depressed terminally ill patients receive care designed to relieve their depression. 2-14 What should we do to relieve the depression of terminally ill loved ones? First, do not place too heavy a burden on the physician. Many physicians do not perform well outside their specialty, especially when venturing into such areas as pain and depression. Second, understand that the depression of your loved one is normal to his condition. Make him feel loved and cared for by doing nice things and acting pleasantly. Make certain he knows he will never be abandoned physically, emotionally or otherwise. Third, observe your loved one for signs of a depression requiring professional help. Fourth, if appropriate, discuss your loved one's situation with nurses who spend time with him and have seen many similar patients. Their experience may help you decide if additional action is warranted. Fifth, when necessary, ask for a consultation with a physician especially trained in the diagnosis and treatment of depression. Sixth, seek additional information, if needed. Seventh, seek a sympathetic religious counselor. REFERENCES (DF) World Book Dictionary (1987) p562 (LA) Care of the Dying, Richard Lammerton, MD of St Joseph's Hospice, The Care and Welfare Library, outlines proper care of the dying, which includes control of depression. Lammerton was one of the first two doctors to specialize in hospice care. Pages 114-140 are perhaps the best, but other parts of the book may also be helpful. (NI) "Plain Talk About Depression" (1992) U.S. National Institute of Mental Health Office of Scientific Information CHAPTER 3 ADVANCE DIRECTIVES FOR HEALTH CARE, INCLUDING LIVING WILLS AND DURABLE POWERS OF ATTORNEY 3-1 What is an advance directive for health care? 3-2 Should most people sign an advance directive for health care? 3-3 Are advance directives for health care legally enforceable? 3-4 What are the main types of advance directives? 3-5 Must advance directives for health care be written? 3-6 What experience shows that advance directives for health care should be in writing rather than oral? 3-7 Does the Federal Patient Self Determination Act require you to sign an advance directive for health care? 3-8 Why are advance directives for health care important? 3-9 What does the durable power of attorney for health care do? 3-10 Are there any limitations on the power of the "attorney in fact"? 3-11 What is the disadvantage of having a durable power of attorney for health care? 3-12 What is the advantage of a durable power of attorney for health care? 3-13 What does the advance directive relating to future medical care do? 3-14 Does the author recommend that patients sign an advance directive relating to future medical care? 3-15 What are the apparent advantages of advance directives relating to future medical care? 3-16 What are the disadvantages of advance directives relating to future medical care? 3-17 How many have signed advance directives of any kind for future medical care? 3-18 What is a living will? 3-19 Can living wills improve medical care? 3-20 What does experience say about living wills? 3-21 What is the most important factor causing patients to choose euthanasia? 3-22 What are directives to kill? 3-23 Can an informal statement cause you to be starved to death? 3-24 What is it like to die of dehydration in a hospital setting? 3-25 What fundamental difference has modern medical technology caused which has made advance directives seem more important? 3-26 Why have advances in medical technology caused pressure for euthanasia? 3-27 What arguments related to improved medical care lead some to favor killing patients? 3-28 Does each person have the legal power to control his medical treatment? 3-29 Who controls medical treatment for people who are not able to control their own medical treatment? 3-30 What is "an informal statement not intended to control medical care"? 3-31 Did Nancy Cruzan, whose case reached the U.S. Supreme court in 1989, die because of an oral informal statement? 3-32 What is a patient protective document such as a "loving will" or "will to live statement"? 3-33 Have all states made at least some advance directives enforceable? 3-34 What is the advantage of a durable power of attorney? 3-35 What is the disadvantage of a durable power of attorney? 3-36 What is the best protection against too much or too little medical treatment when a patient is disabled and may be near death? 3-37 How can the defects of a durable power of attorney best be corrected? 3-38 How can you make a simple document best control each of the thousands of possible conditions which might occur if you become disabled? 3-39 How do I best protect myself from euthanasia and both too much or too little medical care if I become incompetent? 3-40 What type of advance directive is best? 3-1 What is an advance directive for health care? An advance directive for health care is a statement made by a person which is meant to control a decision about his future medical treatment if he should become incompetent. An incompetent person is, because of illness, injury, or other condition, unable to control his medical care. Some state laws call advance directives for health care by other names. 3-2 Should most people sign an advance directive for health care? No. It is preferable for the average person to do nothing, or just discuss his feelings about health care with one or more relatives, friends or doctors. 3-3 Are advance directives for health care legally enforceable? All fifty states now make specified types of advance directives for health care enforceable. Either or both of the durable power of attorney for health care and advance directive relating to future medical care are enforceable in every state. Less radically worded living wills are enforceable. Federal law requires that patients be asked if they have signed an advance directive. 3-4 What are the main types of advance directives? The six main types of advance directives are: (a) durable powers of attorney for health care; (b) advance directives relating to future medical care, legal pursuant to law; (c) living wills which are pro euthanasia statements permitting killing by cutting off food and water or other care or by other means; (d) directives to kill which permit active euthanasia or assisted suicide; they are usually known by misleading euphemisms such as "aid in dying" and are legally enforceable only in the Netherlands. (e) informal statements which were not intended to control medical care but are later used by a court for that purpose; and (f) protective advance directives which are designed to prevent a patient from being killed by the cutting off of care, food or water. An example is the Loving Will published by American Life League. You never have to sign any advance directive. 3-5 Must advance directives for health care be written? No. Oral advance directives for health care can be but need not be given legal effect. However, with oral advance directives witnesses may forget, lie, misinterpret or otherwise confuse or change what was said. 3-6 What experience shows that advance directives for health care should be in writing rather than oral? Many courts have made decisions about medical care of incompetent patients. Many of these courts have decided to cut off food and water to the patient based on alleged oral statements made by the patient, thereby causing the patient's death. 3-7 Does the Federal Patient Self Determination Act require you to sign an advance directive for health care? No. The Federal Patient Self Determination Act 42 USC1395 cc(f)(1), 1396a(a), requires that health care providers such as hospitals tell you that you can prepare an advance directive for health care. However, you are not required to sign an advance directive for health care. You cannot be discriminated against for failure to sign an advance directive. 3-8 Why are advance directives for health care important? Advance directives for health care give other people instructions relating to the power of life or death over an incompetent patient. By selecting or rejecting medical or other care such as food or water, advance directives can either permit a patient to live or cause his death. Many incompetent patients have died after their water and other fluids were cut off because some judge ruled that death would be their wish if they could be asked. DURABLE POWER OF ATTORNEY FOR HEALTH CARE 3-9 What does the durable power of attorney for health care do? A durable power of attorney for health care names one or more adults who need not be lawyers as attorney in fact. The attorney in fact is given power to select, accept or reject future medical care if the patient is considered incompetent (unable to make these decisions). No one ever has to sign a durable power of attorney for health care. 3-10 Are there any limitations on the power of the attorney in fact? While limitations can be placed on the power of an attorney in fact, the typical durable power of attorney for health care places few or no limitations. The attorney in fact usually should be given written instructions by the patient, such as are found in the American Life League Loving Will. 3-11 What is the disadvantage of having a durable power of attorney for health care? Since the attorney in fact has power to accept, select or reject medical care, he has nearly total control over your body if you are incompetent. He could make a different decision than you would have made, a decision which might lead to your death. This is a heavy burden. No one ever has to sign a durable power of attorney. 3-12 What is the advantage of a durable power of attorney for health care? By naming one or more people as attorneys in fact, you give them all power to control decisions related to your medical care, so other people cannot later claim to express your wishes. This can be important if you trust someone else more than your closest relatives, or if you want to give one relative preference over others. In the absence of a durable power of attorney for health care, your doctor will normally discuss life and death decisions with your closest relatives. You can then express your desires for care with your attorney in fact in as much detail as you feel appropriate. If you do sign a durable power of attorney for health care or any other advance directive related to medical care, the author suggests that the document should state: "Euthanasia by act or omission is not among the powers granted by this document, nor is power to cut off food and water while my body can still benefit from them." ADVANCE DIRECTIVE RELATING TO FUTURE MEDICAL CARE 3-13 What does the advance directive relating to future medical care do? The advance directive relating to future medical care is the name given in this book to the documents, legally enforceable by various state laws, which a person may sign to control which forms of medical care may be cut off if he becomes incompetent. The name for the advance directive relating to future medical care and the types of patient care to be cut off under different conditions vary by state. Some states permit even food and water to be cut off. The advance directive relating to future medical care states conditions under which stated types of medical or other care should or should not be given if the patient becomes incompetent. In theory, the directive permits medical care givers to know a patient's wishes if that patient becomes unable to state an opinion. In real life, the possible number of situations related to a patient's medical care is so great and the possible conditions are so unpredictable that many doctors and other experts feel advance directives relating to future medical care usually do more harm than good. 3-14 Does the author recommend that patients sign an advance directive relating to future medical care? No. Prior to writing this book, the author read the advance directives relating to future medical care in every current state law and found all of them too simple and insensitive, and more likely to do harm than good. 3-15 What are the apparent advantages of advance directives relating to future medical care? 1) Advance directives appear to give competent persons control over medical decisions at a future time when they might become incompetent. They appear to empower people by extending the perceived scope of personal autonomy to possible situations in the future where actual autonomy cannot be exercised because the person is no longer competent. 2) Advance directives, if specific enough, seem to permit a patient to control his future by providing a workable rule for treatment and non- treatment decisions. The directives seem to respect autonomy by presently applying rules stated previously by patients who have since become incompetent. However, an advance directive permits treatment to be stopped if certain conditions are met, thereby usually causing the patient's death. 3) By permitting medical care to be cut off (usually causing the patient to die), the amount of money spent on medical care can be reduced. 3-16 What are the disadvantages of advance directives relating to future medical care? A person who has a trusted primary doctor or a close relative likely to make reasonably good decisions should he become incompetent is usually much better off not signing an advance directive. The typical advance directive cannot foresee even one percent of the countless billions of very different possible future situations, only one of which will apply to a patient at any given time. They are a one size fits all document. A really good advance directive would probably have to be the size of a large dictionary to specifically cover a sufficient number of possible medical decisions, then would have to be updated each year to account for advances in medical technology. A patient's interests when signing an advance directive are not likely to be the same as later if he becomes incompetent. Yet one premise of the advance directive relating to medical care is that a patient's interests and values remain significantly the same, so that those interests are best served by following the directive signed when the patient was competent. When anyone's situation changes drastically, his interests and preferences also change. There are many stories of patients who were grateful for a treatment after recovery in spite of contrary orders in an advance directive. Please see chapter 5 for examples of why it is frequently impossible for an advance directive to fulfill a patient's wishes. (RO) It is doubtful whether many of those signing advance directives have truly given informed consent to a future probably fatal withdrawal of medical treatment. Any consent given was probably based on insufficient knowledge for the consent to be informed. In most cases, those signing can not have foreseen their future situations with enough specificity, nor can they have understood their future options nor can they have been sufficiently informed about the conflict between their present interests while signing the document and their future interests when and if they become incompetent. 3-17 How many have signed advance directives of any kind for future medical care? As of the writing of this book, no estimate seen by this author states that more than a tiny minority of Americans have signed any form of advance directive for future medical care. LIVING WILLS 3-18 What is a living will? The living will was introduced at a pro-euthanasia meeting as an advance directive relating to future medical care which is heavily slanted toward euthanasia and is about dying, not living. A living will asks that the patient who signed it be killed if he has any of a number of physical problems or disabilities. The language is chosen to sound to the signer as if problems or disabilities which need not be serious make life too burdensome to continue. A living will can cause someone to die when there is still an excellent chance for full recovery or recovery with bearable residual problems. A living will assumes that if any of its stated conditions occurs, no meaningful quality of life remains and the patient is better off dead. Living wills came out of the euthanasia movement for the express purpose of progressing from passive euthanasia to active euthanasia. 3-19 Can living wills improve medical care? No. No living will states: "I want the appropriate treatment consistent with my medical diagnosis, yet this is why we employ doctors. Doctors already have a duty to give patients the best care possible under the circumstances. Over this prior existing duty, a living will places a pro-euthanasia statement that is so ambiguous it can cause a doctor or someone else to kill a patient by direct action or by omitting medical care that the doctor is otherwise necessary. 3-20 What does experience say about living wills? Thousands of people have expressed a wish to die if some feared disability should befall them. To their surprise, if they later became disabled, they found that life was still precious and they still wanted to live. While they originally viewed their choice as one between life as a healthy person and life as a disabled person, in reality it is a choice between life and death. If cared for physically and emotionally, essentially everyone who is disabled chooses life. The typical patient entering a hospital to face a disease such as cancer will feel that they want to die quickly, before they feel the cancer's worst pain. Surprisingly, after feeling the worst pain, they typically change their mind and appreciate what life remains. 3-21 What is the most important factor causing patients to choose euthanasia? Lack of emotional support and a failure to give reasonably good medical care are the main reasons people seek euthanasia. Patients given reasonable emotional support and reasonably good medical care do not choose euthanasia. (LA) DIRECTIVES TO KILL 3-22 What are directives to kill? Directives to kill permit a patient to be killed under certain conditions. At the time of publication they are illegal every place except in Holland where judges made them legal by court decisions in which they refused to prosecute doctors who killed. In perhaps half of Holland's cases, the patient is killed without giving consent in any way. (FE) In 1994, Oregon voters passed by 51-49% an initiative giving doctors the right to prescribe, but not administer a fatal dose to kill a patient. The initiative was prevented from going into effect because Federal law does not permit such a prescription. 3-23 Can an informal statement cause you to be starved to death? Yes, although usually in cases where starvation is ordered, food and water have both been cut off, and the patient usually died of dehydration before starving to death. 3-24 What is it like to die of dehydration in a hospital setting? Technically, nobody knows, because those who have died cannot tell us. It is possible, however to observe symptoms as the patient's body loses the necessary fluids. In the case of "In re Matter of Brophy", Judge Kopelman adopted as his finding the following expert medical testimony: "If food and water were withheld from Brophy pursuant to the guardian's request, his prognosis would be certain death from starvation, or more probably from dehydration, which would occur within a period of time ranging from a minimum of five days to a maximum of three weeks. "During this time, Brophy's body would be likely to experience the following effects from the lack of hydration and nutrition. (a) His mouth would dry out and become caked or coated with thick material. (b) His lips would become parched and cracked or fissured. (c) His tongue would become swollen and might crack. (d) His eyes would sink back into their orbits. (e) His cheeks would become hollow. (f) The mucosa (lining) of his nose might crack and cause his nose to bleed. (g) His skin would hang loose on his body and become dry and scaly. (h) His urine would become highly concentrated, causing burning of the bladder. (i) The lining of the stomach would dry out, causing dry heaves and vomiting. (j) He would develop hyperthemia, a very high body temperature. (k) His brain cells would begin drying out, causing convulsions. (l) His respiratory tract would dry out, giving rise to very thick secretions, which could plug his lungs and cause death. (m) Eventually his major organs would fail, including his lungs, heart and brain. (BR) 3-25 What fundamental difference caused by modern medical technology has made advance directives seem more important? Modern medical technology is continually improving. Life expectancy has increased by thirty years in the past century. We now know more ways to interrupt, stop or slow the dying process. While the most effective healing techniques return patients to good health, a number of others merely slightly improve the patients' health, leaving them living, but not in ideal health. 3-26 Why have advances in medical technology caused pressure for euthanasia? When medical care was less sophisticated, critically ill patients usually died quickly. Now, in some cases, critically ill patients can be kept alive, even though they are not in medically good condition. The cost of keeping alive patients with some illnesses, injuries or disabilities can be quite high. Since many patients receive government assistance for paying medical bills, any increase in numbers of patients requiring medical care increases cost to the government. Sophisticated new technologies enable many more critically ill patients to survive, many of these patients can only be kept alive at great financial cost and under conditions of partial or total disability. 3-27 What arguments related to improved medical care lead some to favor killing patients? We might become injured or ill so that we are unconscious, incompetent or physically disabled, but still alive through modern technology. Under these conditions, some might consider death to be preferable. The increased cost of medical care tempts some people to reduce medical costs by eliminating patients. 3-28 Does each person have the legal power to control his medical treatment? Each adult usually has the legal power to control his medical treatment, power which can be lost only if the adult loses competence. Because children and adolescents may not yet have developed the ability to think with the maturity and experience necessary to make major medical decisions, the law requires parental consent or the equivalent before medical treatment of minors. This power does not extend to any alleged right to kill oneself if the minor is competent. 3-29 Who controls medical treatment for people who are not able to control their own medical treatment? For a minor, the parents or guardians, with advice from the doctor, control medical treatment. For an adult who has lost the ability to control his medical treatment, the power may be controlled, depending on the circumstances, by his doctor, relatives, guardian, his own prior statements, or a court order. A patient's prior statements may be oral or written. INFORMAL STATEMENTS NOT INTENDED TO CONTROL MEDICAL CARE 3-30 What is "an informal statement not intended to control medical care"? "An informal statement not intended to control medical care" can be any statement, either written or oral. It will not necessarily have any effect on medical decisions (it can be ignored), but it can have a decisive effect, even, as in the Cruzan case, causing the patient's death. (CR) 3-31 Did Nancy Cruzan, whose case reached the U.S. Supreme Court in 1989, die because of an oral informal statement? Yes. Nancy's parents asked the hospital to starve her to death. When the hospital refused, the parents sued and won in the trial court. When the State of Missouri appealed, The Missouri Supreme Court reversed the trial court's decision and held that Missouri law did not require Nancy to be starved. The U.S. Supreme Court upheld the Missouri decision and ruled that there is no U.S. Constitutional Right to Die. (CR) (Only the Right to Life, not any Right to Die, is mentioned in the U.S. Constitution, Amendments 5 and 14). Nancy's parents then found another witness who claimed that before she became disabled, Nancy had made an oral statement, ruled by the judge as sufficient clear and convincing evidence, that Nancy would have wanted her food and water discontinued. Nancy's food and water were cut off, and she died of thirst a few days later. No appeal was taken from this second court decision. PATIENT PROTECTIVE DOCUMENTS 3-32 What is a patient protective document such as a "loving will" or "will to live statement"? A "loving will" or "will to live" statement attempts to protect a patient from having medical or other care cut off if he is disabled. Signing a loving will published by American Life League or other patient protective document can possibly protect a patient's life by establishing what he really wants done in writing, so contrary statements of what he allegedly said do not result in a pro-euthanasia judge issuing an order to have him die of thirst. 3-33 Have all states made at least some advance directives enforceable? Yes. Nearly all states have made enforceable durable powers of attorney and advance directives relating to medical care. State law specified advance directives are usually less slanted toward killing and less ambiguous than living wills. Nevertheless, even these laws suffer from too much ambiguity. Signing an advance directive relating to medical care may cause a patient to die before he is ready. 3-34 What is the advantage of a durable power of attorney? Courts appoint people to control medical care and to decide whether to cut off food and water for incompetent patients. The advantage of a durable power of attorney is that you choose the person who will decide. This enables you to choose somebody who knows your wishes and moral values. 3-35 What is the disadvantage of a durable power of attorney? The person exercising the durable power of attorney usually has little medical knowledge. Additionally that person may be emotionally overwrought due to stress caused by the patient's illness. Further, the patient's actual medical condition usually has only a general relationship with any conditions discussed when the patient was competent. Finally, the person exercising the power is, to a great extent, at the mercy of the primary treating doctor, who can slant medical information either way to make it look like further medical care is or is not warranted. 3-36 What is the best protection against too much or too little medical treatment when a patient is disabled and may be near death? The best protection is a competent and wise doctor, profoundly respectful of human life, who sympathizes with the patient's philosophy of life and afterlife. A doctor, by virtue of his position and knowledge, has tremendous influence on life and death decisions. A patient should learn his doctor's philosophy and not hesitate to switch to a different doctor if appropriate. It may also be helpful for a patient to discuss his feelings towards his doctor if appropriate. It may also be helpful for a patient to discuss his feelings towards his care in various situations with the doctor. 3-37 How can the defects of a durable power of attorney best be corrected? The typical durable power of attorney permits one designated person to stop medical treatment but has no controls to prevent bad decisions. One way to prevent bad decisions is to name more than one attorney in fact and require them to a approve a decision unanimously before medical care is cut off. Also, discuss your philosophy with your attorneys in fact. Additionally, you can sign a will to live document and require your attorneys in fact to abide by it, or you can incorporate by reference a statement against euthanasia such as the Vatican Declaration on Euthanasia. (VA) The author would add: "Euthanasia by act or omission is not among the powers given by this document." 3-38 How can you make a simple document best control each of the thousands of possible conditions which might occur if you become disabled? A simple document can incorporate by reference a more complicated set of guidelines such as the Vatican Declaration on Euthanasia. 3-39 How do I best protect myself from euthanasia and both too much or too little medical care if I become incompetent? Formerly, it was probably best to do nothing except talk to your relatives and doctor. However, even without laws that permit the killing of the incompetent, judges have recently issued a substantial number of orders cutting off food and water for the purpose of killing disabled patients. Accordingly, many are now saying that it is best to make a written statement unless your closest relatives know and agree with your wishes. 3-40 What type of advance directive is best? If you have confidence in your relatives, but want to give them a bit of support, perhaps some short informal written statement would be best. If you respect the Catholic analysis of euthanasia, you might want a statement that nothing be done to you contrary to the Vatican Declaration on Euthanasia. If you want a more formal loving will document or related information, write for information to ALL, PO 1350, Stafford, VA 22555. REFERENCES (BR) Judge David H. Kopelman, "In re Matter of Brophy", Massachusetts (CR) See Cruzan V Director, Mo. Health Dept, (1990) 111 L Ed 2d, p324 (FE) "The Report of the Dutch Governmental Committee on Euthanasia" by Richard Fenigsen, MD, PhD, Issues in Law and Medicine, Vol 7, No 3, Winter 1991, p344 (FP) Patient Self Determination Act of 1990 (Medicare Self Determination Act) Pub Law No. 101-508, Sec. 4206, 4751, (RO) John A. Robertson "Second Thoughts on Living Wills" Hastings Center Report, Nov-Dec 1991 (VA) See Chapter 21 for a copy of the Vatican Declaration on Euthanasia CHAPTER 4 DOCTORS CRITICIZE ADVANCE DIRECTIVES FOR FUTURE MEDICAL CARE 4-1 What do detailed advance directives for future medical attempt to do? 4-2 What is the main disadvantage of detailed advance directives? 4-3 What is the Medical Directive? 4-4 Describe the options the Medical Directive gives the patient. 4-5 Ideally, how are difficult medical decisions made? 4-6 Why does the detailed advance directive fail to answer the questions that really matter? 4-7 How can detailed advance directives such as the Medical Directive contradict the patient's goals? 4-8 What is the inherent weakness of detailed advance directives such as intervention-focused directives for future medical care? 4-9 Why can't you just make the advance directive more detailed? 4-10 Why can't you incorporate an escape mechanism that enables a proxy to override the advance directive in certain cases? 4-11 What are some disadvantages of elaborately detailed advance directives such as the Medical Directive? 4-12 What are some disadvantages of values histories advance directives? 4-13 How does a living will tie the doctor's hands in cases where he might be able to do great good? 4-1 What do detailed advance directives attempt to do? Regular advance directives for future medical care have been criticized for doing more harm than good because they do not give instructions in sufficient detail to help a physician know what a patient might want done in many medical situations. Detailed advance directives attempt to solve this deficiency by providing more instructions, hoping to increase the patient's self determination by substituting his judgment when the patient was competent. Thus, the judgment of a patient while competent but unaware of future medical situations is used to advise a physician later when the same patient is experiencing a medical situation while longer competent. 4-2 What is the main disadvantage of detailed advance directives? Detailed advance directives usually give a doctor instructions as to whether or not he should treat in about a hundred possible future care situations. These directives give a patient false confidence that instructions have been provided for everything or nearly everything possible. Unfortunately, even a million scenarios are only a very small percentage of the possible future care situations. Accordingly, the possible number of future medical care situations for a patient which must include combinations of medical problems, is many billions. Accordingly, in many cases, the future medical problem with its complications will not be one of those foreseen by the patient, so that the directive could do more harm than good. 4-3 What is the Medical Directive? The Medical Directive, a very detailed advance directive distributed by the Harvard Medical School Health Letter, is specific and focuses on selected examples of medical care such as discrete diagnostic and therapeutic interventions. Analysis of the Medical Directive illustrates the probable inability of any detailed advance directive to help the physician know what the incompetent patient would advise in a complicated future medical care situation. 4-4 Describe the options the Medical Directive gives the patient. "Four hypothetical clinical scenarios are described, each representing a situation that involves altered mental status or coma, with or without an accompanying terminal illness. For each scenario, 12 possible medical interventions are listed (eg., mechanical ventilation, surgery, dialysis, diagnostic tests, antibiotics, transfusions). The person completing this document marks whether he or she would choose each therapy or procedure for each of the clinical scenarios. In other words, the person is asked to make 48 hypothetical clinical judgments. Although the document also provides space to name a proxy for health care decisions, and to give a narrative account of one's general wishes, its central feature is clearly its 4x12 grid (containing 48 possible examples of medical care decisions)." (BR) 4-5 Ideally, how are difficult medical decisions made? "The patient's perspective is the usual yardstick by which we judge the appropriateness of medical interventions-life-sustaining and otherwise. Patients, however, do not select or reject diagnosis or therapeutic interventions in a vacuum; they choose interventions according to the clinical context in which they find themselves. Two basic contextual questions are relevant. "First, what are the plausible courses of medical care that could be provided for this patient, given the patient's medical and personal situation? And second, which of these possible courses is most desirable from the patient's perspective? If we can answer these questions, we are generally in a position to treat patients according to their conceptions of their own best interests. "This thinking shifts the focus away from judging the appropriateness of medical interventions according to impersonal standards (eg. invasiveness) and toward a view of interventions as means to a patient-specified end. Thus, the use of mechanical ventilation, dialysis, or transfusions is appropriate or inappropriate primarily with reference to objectives such as living longer, living more comfortably, or dying more peacefully." (BR) 4-6 Why does the detailed advance directive fail to answer the questions that really matter? "The person is given a clinical context (eg. advanced irreversible dementia) and asked whether he or she would choose an intervention (eg. use of antibiotics). But a problem quickly arises, because the person would be unable to choose or reject antibiotics categorically without knowing the reasons they were proposed and whether those reasons were consistent with his or her perspective. For example, assume the position of a person whose projected wish in such a context would not be longevity, but rather physical comfort until death ensues. This person might desire penicillin for a painful skin infection, but not a relatively toxic antibiotic such as amphotericin for a probably fatal systemic fungal infection. Or, the patient may not want an antibiotic for a virulent pneumonia that will lead to rapid death, but prefer an antibiotic for an indolent pneumonia that is not expected to result in death but is causing an uncomfortable cough and chest pain. "The point here is that the check list of interventions does not answer the two questions that really matter: 1. What general views about medical care and life-sustaining treatment would this person espouse for the situation of advanced dementia? and 2. When those views are applied to the context of a specific infection will antibiotics produce a greater balance of benefits than burdens. The first question probably could be answered in advance, but the second could not." (BR) 4-7 How can detailed advance directives such as the Medical Directive contradict a patient's goals? "Consider the case of one of my own patients who completed the Medical Directive: in the context of advanced dementia, he selected blood transfusions, but rejected diagnostic procedures such as upper gastrointestinal endoscopy. If that patient developed upper gastrointestinal bleeding, we would be asked to administer transfusions, while avoiding an endoscopic procedure that might not only be diagnostic but also therapeutic ( eg., by coagulating the bleeding site). If the patient's goal in these situations was a speedy death, he would likely not want either transfusions or endoscopy. If he wanted to continue to live, he would likely want both. But it is absurd to dissociate the two interventions by replacing blood losses but not performing a simple procedure to stop the bleeding." (BR) 4-8 What is the inherent weakness of detailed advance directives such as intervention-focused directives for future medical care? "In summary, the intervention-focused directive runs the risk of promoting the selection or rejection of interventions because of their inherent characteristics, rather than as appropriate means to the ends that the patient would have wanted." (BR) 4-9 Why can't you just make the advance directive more detailed? "...this refinement is logistically problematic (ie., the number of plausible combinations and permutations of interventions and clinical contexts is virtually limitless), and it still fails to give precedence to treatment goals." (BR) 4-10 Why can't you incorporate an escape mechanism that enables a proxy to override the advance directive in certain cases? "If proxies or physicians are given license to override the patient's written choices according to their own conception of what is now 'medically reasonable,' little reason existed to complete a detailed check list in the first place." (BR) 4-11 What are some disadvantages of elaborately detailed advance directives such as the Medical Directive? Elaborate advance directives such as the Medical Directive appear so complicated that they make the patient think they have covered most possibilities. If we consider secondary complications, the number of possible future medical conditions is so large that even the most elaborately detailed medical directive would shed light on only a tiny percentage of the possibilities. The Medical Directive might require some action to be taken or not taken which would be inappropriate in view of some secondary complication. 4-12 What are some disadvantages of "values history" advance directives? Values history advance directives tell a doctor about the values the patient held while competent in the hope that such knowledge will assist in establishing general rules governing treatment. As with other advance directives, values history advance directives shed light on simple situations, but are frequently worse than no statement in complicated situations. Properly done, however, they can help a doctor apply his patient's general philosophy of treatment. 4-13 How does a living will tie the doctor's hands in cases where he might be able to do great good? "The 'living will,' a document in which the patient permits and instructs his physician to let him die if his condition is hopeless, really solves nothing but does create problems of its own. The danger is that relatives, deciding for any number of reasons that active treatment should be stopped, will attempt, with or without legal support, to prevent the doctor from continuing his life-saving efforts, or that the doctor will find that the existence of such a document will be one reason' to terminate his active treatment. "In any case, the complex and difficult decisions faced during the care of the critically, and possibly terminally, ill patient are in no way going to be simplified by 'the living will,' which would merely convert a possibly fatal outcome into a certainly fatal one. "The 'right to die' concept implies that, if our death is certain and immediate we have the 'right' to make it even more immediate. The now obvious fallacy is that the patient or the doctor can know when death is certain. This is the 'hopeless case' problem in human rights clothing except that the 'right to die' is the one 'right"' we all are absolutely guaranteed at the moment of our conception. "We must never forget that on occasion patients, their families, and their physicians will conclude that a disease has reached the hopeless stage and death is imminent-and be wrong. If they can stop treatment on the basis of their hopelessness, the prophecy becomes self-fulfilling. "Whether the patient was going to die or not, their action ensures his death and the physician's confidence in his ability to predict death is dangerously enhanced. We must keep in mind that all medical therapy, curative or palliative, only prolongs life and hopefully improves its quality, or what we call its 'health.' "Finally, what many laymen fear is that the doctor, in a pointless attempt to postpone death, will keep them in agony for long periods of time-the prolongation of suffering problem. A number of studies have shown, and this corresponds to my experience, that the majority of critically or terminally ill patients do not have pain and that those who do can be controlled by the judicious use of pain-killing medicines. "It is essential that everybody understand that while a physician strives to cure a patient or to bring his incurable disease under control, suffering can be prevented and severe pain need not occur." "We can now see that such approaches as legalized euthanasia and 'the living will' are based upon the misconception that the point of hopelessness can be known with accuracy and that the physician may uselessly prolong suffering beyond that point of hopelessness can be known with accuracy and that the physician may uselessly prolong suffering beyond that point unless forbidden by law or similarly excused from his obligation. "I fear that, unless people understand the false reasoning behind these concepts, the physician's hands may be tied in just those cases where his skill and modern technology can make the greatest contribution to the saving of lives and the control of disease." (FO) REFERENCES (BR) "Limitations of Listing Specific Medical Interventions in Advance Directives" Allan S. Brett, M.D., Journal of American Medical Association, 8/14/91, Vol. 266, No. 6 P. 825 (FO) Testimony of Laurance V. Foye, MD, Director of Education Services of U.S. Veterans Administration, formerly with National Cancer Institute, before U.S. Senate Special Committee on Aging, 8/7/72 CHAPTER 5 WHAT YOU SHOULD CONSIDER ABOUT INTERPRETATION OF ADVANCE DIRECTIVES 5-1 What difference can the interpretation of advance directives relating to future medical treatment make? 5-2 What are the two main conflicting general standards for interpreting advance directives? 5-3 How does the best interests standard work? 5-4 What is considered so wrong about the best interests standard, that some consider the right to forego medical treatment method necessary? 5-5 How is the right to forego medical treatment method used to kill? 5-6 If I have signed an advance medical directive for future medical care, how do I protect myself from being killed by someone exercising my right to forego medical treatment? 5-7 What can you put into an advance directive to protect yourself? 5-1 What difference can the interpretation of advance directives relating to future medical treatment make? The interpretation of an advance directive can be the difference between life and death. The nearly infinite number of possible disability conditions to which any advance directive relating to future medical treatment must be applied makes it impossible to explicitly cover more than a tiny fraction of the future possible conditions. Thus, the interpretation may be more important than what the directive states. 5-2 What are the two main conflicting general standards for interpreting advance directives? The older standard used by courts is the "best interests" standard. Since it is not always easy to show that nontreatment is in someone's best interest, many courts have adopted a new standard called "substituted judgment". (See chapter 22) Substituted judgment is frequently used to exercise an alleged right to forego medical treatment for the purpose of killing the patient. 5-3 How does the "best interests" standard work? When there is any ambiguity or any interpretation to be made, the document is to be interpreted to further the best interests of the patient. 5-4 What is considered so wrong about the best interests standard, that some consider the substituted judgment standard necessary? It is usually difficult to show that non-treatment or non-feeding which everyone knows will result in the patient's death is in the best interest of the patient. So, if you seek non-treatment or non-feeding in order to kill a patient, some other method of interpretation that sounds good, but permits non-treatment and non-feeding, becomes necessary. 5-5 How is the "right to forego medical treatment" method used to kill? Everyone will die if food is cut off. They will die much sooner if they receive no water or other fluids. If food and fluids are defined as medical treatment, then they can be cut off for the purpose of killing the patient. This killing is disguised as an exercise of the patient's right to forego medical treatment. 5-6 If I have signed an advance directive for future medical care, how do I protect myself from being killed by someone exercising my right to forego medical treatment? Read your advance directive for future medical care carefully. Unless it covers every possible future event in the way you would wish (which this author believes to be impossible), or if you do not understand it completely, cancel your advance directive. You would not sign a will unless you understood it completely. Why sign a document that could kill you unless you understand it completely? You would be better off with no advance directive than with an imperfect advance directive. Realize that a doctor who favors killing incompetent patients is going to kill them in situations where other doctors would attempt to care for them. Learn your doctor's philosophy about treatment. It is your right to ask and his duty to answer. You should also discuss future care with a relative. If you still have any doubts about future care, it might be prudent to state in writing that your future medical care should not include euthanasia by act or omission, or in any way be contrary to the Vatican Declaration on Euthanasia or some similar protective document such as the Loving Will from American Life League. 5-7 What can you put into an advance directive to protect yourself? Tell your relatives and/or doctor and state in your advane directive that: "Euthanasia by act or omission is forbidden by this document." CHAPTER 7 FREEDOM TO REJECT UNWANTED MEDICAL CARE 7-1 Is there a legal duty to receive unwanted medical care? No. In the Cruzan case, 111 L Ed 2d 224 (1990), the U.S. Supreme Court stated: "...the common-law doctrine of informed consent is viewed as generally encompassing the right of a competent individual to refuse medical treatment." (CR) 7-2 Why do euthanasia advocates tell horrible stories about people who have tubes, cannot die, and are being painfully treated without their consent and contrary to common sense? These stories are usually embroidered and misleading fiction. The stories are told because they are horrible. Euthanasia advocates want the public to believe there are only two choices, euthanasia, and fictional over treatment which must be made to appear even worse so that euthanasia will be chosen as the lesser of two evils. 7-3 How many patients need tubes to prevent unbearable pain? Very few. See chapter 1. 7-4 How do you draw the line between permissible allowing to die and killing? In permissible letting die, the disease or condition is the cause of death. In killing by euthanasia, death is caused by one or more acts or omissions which are intended to cause death. 7-5 Is there a moral duty to accept extraordinary or disproportional care? No, and there never has been. One does have a moral duty to avoid suicide and other forms of self destruction. Chapter 8 THE DOCTOR/PATIENT RELATIONSHIP 8-1 If a person does not want to, must he see a doctor or enter a hospital? 8-2 Does a patient have to accept the doctor's advice if he does not want to accept it? 8-3 Does a patient have an absolute right to order the doctor to stop treating him or to stop a course of treatment that has begun? 8-4 If the doctor and patient communicate, will the patient discharge the doctor or ask to die? 8-5 What should the seriously ill patient be told? 8-6 Will the judgment of a well-informed family differ from the judgment of a well-informed physician? 8-7 What if conditions change so a previous decision is no longer correct? 8-8 What forms of treatment should be used? 8-9 How easy should it be to reverse medical decisions, such as a decision to go home or forego or undergo a treatment? 8-10 How do you decide whether to go home or to the hospital or hospice? 8-11 What is the most important thing a patient can do to make certain he does not receive euthanasia if he becomes incompetent? 8-12 What is the most important factor in determining if an incompetent patient will be given euthanasia directly or via a failure to give the patient the best medical care? 8-13 How does a doctor who favors euthanasia slant information so that more of his patients die more quickly? 8-1 If a person does not want to, must he see a doctor or enter a hospital? No. (FO) However, incompetent people may be hospitalized without their consent. 8-2 Does a patient have to accept a doctor's advice if he does not want to accept it? No. (FO) However, people should ordinarily follow their doctor's advice. 8-3 Does a patient have an absolute right to order a doctor to stop treating him or to stop a course of treatment that has begun? Yes. "He has the perfect right at any instant to say: 'I am going home. I am leaving the hospital. I am discharging you from the case. I am refusing the next form of treatment you offer.' That is absolutely essential in this medical relationship." (FO) 8-4 If the doctor and patient communicate, will the patient discharge the doctor or ask to die? "My experience, however, with hundreds of incurable cancer patients over a period of 9 years is that I have never had one single patient refuse treatment or request that I let him die. I have never had it happen." (FO) 8-5 What should the seriously ill patient be told? "Every patient, of course, knew what was going on, knew what we could and what we couldn't do, knew what the risks were, knew that he was a totally free agent to say at any point, 'I am leaving,' or 'I don't want any more,' or, 'Stop now.' And this was made very clear to them repeatedly. Every patient understood that." (FO) 8-6 Will the judgment of a well-informed family differ from the judgment of a well-informed physician? "I have never known of an instance where the judgment of a well-informed family in this matter was different from the physician's. In other words, if the patient was in pain, both the doctor and the family wanted the pain relieved. If the patient appeared to have any number of different symptoms, both the family and the doctor wanted any discomfort controlled. "So I think the critical factor in achieving this kind of harmony of desire and interest in the patient's welfare is very thorough education of the patient and the family. I think they both must thoroughly understand what can be done, what is going on with the patient, what he is suffering, and what given manifestations mean; I just have not experienced a conflict in this matter between the well-informed family and myself." (FO) 8-7 What if conditions change so a previous decision is no longer correct? "At each point in the path one has to make a decision, Do we go on? Do we try some new form of treatment to try to control the disease, something more 'heroic,' as the term is or is this the point where the patient might consider going home and when we say that we have tried everything that offers any chance?" (FO) 8-8 What forms of treatment should be used? "I am not advocating using every machine in the building because it is there, but I am advocating using those forms of treatment that offer any hope of success." (FO) 8-9 How easy should it be to reverse medical decisions, such as a decision to go home or forego or undergo a treatment? "After discussion between the wife, the patient, and myself, we may have decided that the best next move is that the patient go home, and then if his condition suddenly deteriorates, he can always come back. In other words, the decision to go home must in no way make it more difficult to return. One maintains a two-way street very easily traveled back into the institution and back out to the home. I think this is the ideal situation." (FO) 8-10 How do you decide whether to go home or to the hospital or hospice? "There was nothing wrong with care at home, let's say, dying at home or birth at home, when there was no better care available anywhere else. There was no point in going to the hospital for these conditions because nothing more could be done there than at home. Today, birth at home would not be the safest form of birth if you have a complication, if you are not where the modern techniques for handling severe complications exist. "The same thing may apply to the seriously ill patient, the incurable patient, the 'hopeless' patient. He, for certain reasons, may need to be in an institution, and, at other times, may be better off at home, and he should have, I believe, the freedom to move back and forth as his condition and needs change." (FO) 8-11 What is the most important thing a patient can do make certain he does not receive euthanasia if he becomes incompetent? A patient with a serious illness should ask how his doctor feels about euthanasia, and the patient should tell his doctor that he opposes euthanasia. 8-12 What is the most important factor in determining if an incompetent patient will be given euthanasia directly or via a failure to give the patient the best medical care? The doctor's attitude toward euthanasia plays a gigantic role in determining whether a patient receives euthanasia, according to doctors with whom the author has discussed this matter, since the doctor has control of the medical information. This information is sometimes so complex and beyond the normal family's experience that the family must rely on the doctor's interpretation of the facts and his projection of what is likely to happen in the future. A doctor can easily mislead by omission. A doctor who favors euthanasia can control the family by shading his opinion just slightly here and there or omitting this or emphasizing or not emphasizing that to give the family a misleadingly pessimistic view. This is why some identically ill patients live substantially longer with some doctors than others. 8-13 How does a doctor who favors euthanasia slant information so that more of his patients die more quickly? A doctor need not lie to mislead relatives. The type of questions asked when a loved one is seriously ill and incompetent are general questions. The patient's relatives do not ordinarily know enough to ask questions that require precise answers that would allow the relatives to precisely evaluate the patient's condition and prospects. Accordingly, in answering questions or giving opinions and information, a doctor's philosophy will cause him to emphasize aspects of the patient's condition that the doctor believes are more important. If a doctor favors euthanasia, he is far more likely to describe the patient's condition in a way that will justify the outcome the doctor believes to be best, even if this outcome is euthanasia. REFERENCE (FO) Testimony of Laurance V. Foye, MD, Director of Education Services of Veterans Administration, formerly with National Cancer Institute, before U.S. Senate Special Committee on Aging, 8/7/72 CHAPTER 9 NURSES AND EUTHANASIA 9-1 What insights do nurses bring to the euthanasia question? 9-2 In the Nancy Cruzan case, did the nurses who cared for Nancy agree that her food and water should be cut off? 9-3 Have any nurses commented on practical problems with living wills? 9-4 How did Nurses for Life characterize the relationship between nurses and the dying in their brief to the U.S. Supreme Court in the Cruzan case? 9-1 What insights do nurses bring to the euthanasia question? As anyone who has been hospitalized has observed, doctors spend relatively little time with patients. Nurses spend far more time with patients than doctors, and accordingly, have far more time to observe and relate to patients. 9-2 In the Nancy Cruzan case (CR), did the nurses who cared for Nancy agree that her food and water should be cut off? No. There were 39 nurses who cared for Nancy Cruzan. These 39 nurses unanimously refused to cooperate with the cutting off of Nancy's food and water. (CR) 9-3 Have any nurses commented on practical problems with living wills? Madeline Satwicz, RN, made these comments about the practical problems living wills cause nurses: "You bet death is a dirty word. And, by golly, the anti-abortionists are right. Abortion really does lead to mercy killing, and the promoters are using exactly the same language and the same tactics. And the same media is flooding us with the same hard soft sell. All in the name of mercy, personal right and freedom. "As a nurse, I have a few thousand questions to address to the signers of the 'living will' because I may be the one expected to administer it. If I misinterpret what you sign, or just let my fatigue show near the end of a wild eight-hour shift, I may just shove you into the great beyond before you are ready. "Do you present this document to me when you check in? Do you give it to the gal in admitting so you can be put in a special section? What name do we give this section? "Do I accept it from trusted relatives and/or friends? How do I know who this is? Will the untrusted ones look different? "Do I only follow your doctor's orders? Suppose he takes off on a world tour; can the resident write in final orders? By bodily functions, I assume you mean bladder and bowel control. As so few patients following surgery are left with this dignity, does the need for a catheter, or an enema, put you in the 'worthless' category? How many soiled beds should I allow you before I put you out of your misery, and mine? "All of us exhibit signs of senility at least once each day, including editors that publish 'living wills.' Do we put you through a memory and sanity test each hour? What's a passing score? "How about two weeks and one hour, or two weeks and one day, as the limit on dependence on some life saving gimmick? Who does the countdown? What constitutes 'full recovery' of vital organs? Emphysema is an irreversible condition of the lungs; no way can this vital organ be made whole again. How do I resolve this? "Do I ask you if you have had enough intravenous feedings? Do we, in committee, decide? Or will there be a standing house order? And if I chicken out, can I leave scalpel or syringe or pills at your bedside? What if you botch the job? Do we all get another chance? Do I tell you when I bring in the final dose? Do I insist you take it even if you change your mind? "How do I keep the confidence of my other patients who get nervous with all this insanity swirling around them?" Madeline Satwicz, RN, Detroit. (HE) 9-4 How did Nurses for Life characterize the relationship between nurses and the dying in their brief to the U.S. Supreme Court in the Nancy Cruzan case? (CR) "Disabled people remind us of our own vulnerability, fragility, and mortality. We find that frightening. We would prefer to think of her as different from us. But we cannot. "All of us, in some way are disabled from blindness, retardation, paralysis, mental illness or any number of things. Others of us are invisibly disabled from greed, intolerance, pride, apathy, selfishness, etc. Sadly, these invisible disabilities may be the most severe of all. "As nurses, we are sometimes called upon to be the 'last friend' of people abandoned by relatives, friends, or even society. We are the ones who care for those with AIDS, the terminally ill, the severely deformed, the comatose, the cantankerous, the deranged, the homeless. We do not change our level of commitment or caring. We are professionals; we do not discriminate. "In court cases involving people like Nancy Cruzan we are often one of the few voices upholding our patients' right to be fed and cared for. Why? Not because we are paid large sums of money for our work. Not because we are ignorant. Not because, as one witness put it, we are too emotionally involved' with our patients. "We speak out because we are professionals. We speak out because justice demands it. We speak out because our patients cannot. "By caring for these people whose very existence seems to trouble society, we nurses are affirming the humanity of us all. "The role of nurses is not only to provide care for a patient but also to be an advocate for that patient. The amount of time spent with patients, the intimacy of the nurse-patient relationship, and the emphasis nursing places on meeting the physical and emotional needs of patients and their families places nurses in a unique position to contribute to discussions of health care ethics and public policy. "As patient advocates, the best interests of the patient is our foremost consideration. The judgment of the doctor, the policies of the health care institutions, and the wishes of the family cannot take precedence over the rights of the patients. "While we agree that the question of who should make health care decisions when a patient is unable to speak for himself is an important question, the larger question should be what decision is being made. We strongly believe that health care' decisions to cause the death of a patient are illegitimate no matter who is making the decision. Therefore we conclude that it is not ethically permissible to withhold or withdraw food and water from people in the so-called 'persistent vegetative state' or from other categories of seriously disabled but non-terminal persons. "We feel such actions constitute abandonment of the patient. Even when cure is not possible we still have a responsibility to care for the patient. Justice requires that we extend the basic necessities of life to all persons, regardless of race, age, socioeconomic status, disabilities, etc. To deny these necessities to some (rapidly expanding) groups of people based on their degree of disability is discrimination. Causing death by starvation and dehydration should not be more morally palatable simply because it occurs (for now) in a medically sanitized setting. "Withholding nutrition and hydration from non-dying, disabled people does not 'allow' these people to die, it forces them to die. Starvation and dehydration is a slow, painful, and disfiguring process. For example, in 1988 Marcia Gray, a Rhode Island woman, reportedly lost 50 pounds and required medication to control seizures during the 15 days it took her to die following court-sanctioned removal of her feeding tube. Death by starvation and dehydration is hardly 'death with dignity.' The main witnesses to these kinds of deaths are nurses. The negative effects, both personally and professionally, of participation in these kinds of deaths may mandate the institution of special wards to insulate the stress from other patients, staff, and visitors. "Furthermore, we deplore the recent trend in some court cases to force institutions and health care providers by court order to remove feedings in violation of conscience rights. If this trend continues, health care professionals will be reduced to mere technicians dispensing a consumer service. Usual standards of professional accountability and judgment will be rendered inoperative in these cases. The effect on the art and science of health care will be devastating. "The perceived economic imperative of rationing health care will almost certainly expand the pool of vulnerable people. Quality of life criteria could even come to include socioeconomic status, family support, and the willingness of society to offer services. We have already seen this in the current Johnson case in Oklahoma. In that case an actual formula was devised to decide which babies with spina bifida would receive aggressive treatment. The formula was even published in a pediatric journal: QL=NE(H+S): quality of life equals natural endowments times the expected contribution from the home and society. Using this equation could logically mean that a perfectly healthy but deprived child could come up with a low score on quality of life. For example QL=100(0+0)=0. "Discrimination. Consciously or unconsciously many of us are accepting the removal of feedings because of personal fears of becoming disabled or being a 'burden' on loved ones. Most healthy people cannot imagine what it is like and assume that life would be devoid of comfort or happiness with even a partial disability. However, our natural fear of becoming disabled and 'losing control' must not allow us to discriminate against people with disabilities. Quality of life must not take precedence over the sanctity of life. "Disabilities can range from mild to severe. It is impossible to arbitrarily choose one point for non-treatment without risking the lives of people with lesser disabilities. As nurses we care for people some of whom can be returned to normal health, some of whom we cannot save, and some of whom are left with impairments. Our commitment to caring for each of these groups is the same. "Too, as nurses, we have been impressed and inspired by our patients and their relatives. The will to live, ability to accept hardships, and love of life we see in these people teaches us much and makes our work very rewarding. It is sad when we hear that people like Nancy Cruzan lead a 'degrading' life by having others bathe, toilet, and feed her. We believe that our care is not degrading but rather an act of love. "More and more we are encountering an attitude in society that no one should be a burden on anyone else. However, we must realize that total independence is a myth; the reality is interdependence. All of us are dependent on each other: we need farmers and truck drivers to provide us food. We need builders to shelter us, etc. "Also, at some point in our lives, we are all 'burdensome.' All of us begin life as helpless babies totally dependent on others. Illness, injury, old age, even the stresses of being a teenager can make us burdens on our families or society. "As we all know, too, it is a humbling experience to require or to ask for help. But both giving and receiving help has its own rewards and strengthens our commitment to each other. The measure of our humanity and our civilization is how we take care of one another, particularly the weakest and most vulnerable among us. "To deny feedings to non-dying, disabled people like Nancy Cruzan will have many adverse repercussions: it would have a discouraging effect on other people with disabilities, their families, and care givers by discounting their efforts. It could lead to economic coercion by leading to withdrawal of insurance payments. It could subtly increase other discrimination against the disabled and promote the myth that the disabled are burdens. A person's limitations do not decrease a person's humanity or worth. "To sanction the denying of feedings could lead to lawsuits against families and care givers who follow their consciences. It could lead to further shortages of nurses who, by being the main witnesses to these kinds of deaths, might leave the profession or never enter it. It could lead to ]the destruction of trust between nurse and patient because the nurse (and doctor) would assume a dual role as killer/care giver. The patient might be reluctant to discuss negative or ambivalent feelings for fear that it might influence a decision that his or her quality of life was not high enough. It could produce a deadening effect on doctors and nurses in relating to commitment to patients and respect for life. Rationalizing active euthanasia like injections would become easier. "Sanctioning denial of feedings could lead to more lawsuits like Nancy Farnum's (Farnum v Crista, Superior Court of Washington for King County. Farnum, who previously had a good record, was fired for refusing to withdraw a patient's feeding tube when the doctor who wished to kill the patient ordered her to do so) - as other nurses who refuse to participate are fired, encouraged to resign, or have other sanctions imposed by health care facilities. If sanctioned, it would be impossible to limit denial of feedings to institutions and what used to be considered abuse or homicide in the home setting could be socially or legally sanctioned. If feedings are denied, it could make it difficult to enforce any mandatory minimum care. "Tube Feedings. We recognize that it is ethically permissible to remove treatments or care which is useless or burdensome to the patient. However, in deciding what treatment or care can be ethically withdrawn, it is important that the treatment itself be judged, not the 'quality' of the person's life. We should not deliberately cause death and then disingenuously claim death came "naturally." "Feeding whether by tube or mouth can rarely be considered either useless or burdensome unless, for example, a person is imminently dying. In general, supplying food through a feeding tube costs less and is usually less troublesome to provide than a prepared meal. Most people tolerate this form of feeding quite well with no pain or discomfort. Discomfort or problems that do occur are usually manageable. For many people attempts at oral feedings would be far more burdensome or even dangerous. For example, many people in nursing homes receive tube feedings for convenience reason or because the ability to swallow is partially impaired. "The new trend of calling tube feedings useless or 'artificial' is problematic. The purpose of tube feedings is to maintain the nutritional status of a person. Tube feedings do not treat illnesses. Tube feedings cannot cure brain damage. To call tube feedings 'useless' is to ignore the purpose for which they are intended. "To call tube feedings 'assisted feedings' rather than 'artificial feedings' also raises other questions: if feedings can be artificial could not also clothing or maintenance of room temperature also be considered artificial? Is bottle-feeding a baby artificial? If tube feedings consist of nothing more than blenderized food would they then be considered natural? With so much of our nation's food supply artificially processed could not our regular food be considered artificial? Is the tube itself more analogous to a machine or a simple soda straw? Why would an "artificial" medical treatment such as a morphine drip for pain be considered necessary for prevention of discomfort while feedings would not? Why is bathing or turning patients who have their feeding tubes removed considered mandatory? "Tube feedings have been in existence since the l9th century. In recent years there have been great innovations in tube feedings. Tubes can now be inserted at the bedside. Gastrostomy buttons (small mushroom-shaped devices which lie flat on the abdomen) can be inserted and even changed or reinserted by a conscious patient. Tube feedings can now be given either intermittently or continuously to minimize problems. "We believe the attempts at practical or ethical justifications for removal of feedings will mislead people to believe that causing death by omission is different fundamentally from active euthanasia by lethal injection, overdose, etc. Indeed it is ironic that both we and pro-euthanasia groups agree that there is no real difference between causing death by starvation and dehydration or causing death by giving a lethal injection or other active means. Some pro-euthanasia groups logically consider lethal injections more 'humane' since death by starvation and dehydration is a slow, painful and disfiguring process. "Persistent Vegetative State. This is an unfortunate and imprecise term used to describe people who are severely brain-damaged but not dying or brain-dead." REFERENCE (CR) Cruzan v Director, MO Health Dept (1990) 111 L Ed 2d 224 (See Chapters 10 and 11 for additional details) (HE) Handbook on Euthanasia, (1975) Sassone, p108 CHAPTER 10 THE COURTS AND THE NANCY CRUZAN CASE 10-1 Who was Nancy Cruzan? 10-2 What did the U.S. Supreme Court decide in the Cruzan case? 10-3 What happened after Nancy won in the U.S. Supreme Court? 10-4 Of the 39 nurses who cared for Nancy, how many favored cutting off her food and water? 10-5 What did the trial transcript say about how injured Nancy Cruzan was and about what Nancy could still do? 10-1 Who was Nancy Cruzan? Nancy Cruzan was a young woman who suffered brain injury in a 1983 automobile accident in Missouri. She was hospitalized in what was called a persistent vegetative state. Nancy was initially fed by mouth, but after a time, was fed instead by tube. The change to tube feeding was made not because Nancy could not be fed by mouth, but because tube feeding saved nurses' time. Her parents decided to seek a court order to kill Nancy by cutting off her food and water, based on the allegation that would be Nancy's wish if she could talk. 10-2 What did the U.S. Supreme Court decide in the Cruzan case? The trial court granted the request of Nancy's parents to cut off her food and water. The Missouri Supreme Court reversed, holding that clear and convincing evidence had not been shown that Nancy would want to be killed by having her food and water cut off. It further held that Nancy had a right to refuse care, but that the refusal was personal to Nancy. The U.S. Supreme Court then held that there is no U.S. Constitutional right to die or right to cause death. (The right to life is guaranteed by the U.S. Constitution, but the U.S. Constitution does not mention a right to die.) The U.S. Supreme Court also held that nothing in the U.S. Constitution prevents Missouri from requiring clear and convincing evidence of Nancy's intent before cutting off Nancy's food and water. (CR) 10-3 What happened after Nancy won in the U.S. Supreme Court? Her parents alleged that they had found new evidence of Nancy's intent to have food and water cut off which was stated before her automobile accident and subsequent disability. The same trial judge who had previously ordered Nancy killed ruled again that Nancy's food and water should be cut off. There was no appeal, and Nancy died of dehydration a few days later. 10-4 Of the 39 nurses who cared for Nancy, how many favored cutting off her food and water?