MY CHOICES - GUIDE TO MAKING TREATMENT CHOICES
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- Nickolas Franklin
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1 MY CHOICES - GUIDE TO MAKING TREATMENT CHOICES You Make the Choice - Frequently asked questions Difficult Decisions: CPR, Emergency Life Support and Life Sustaining Treatments We re Here for You Consider this your personal workbook; make notes of questions to ask healthcare professionals and of questions to ask yourself. Some sample questions are included in the book. Decisions about cardiopulmonary resuscitation (CPR) and life support are some of the most difficult decisions you will ever have to face. We hope you will find this booklet helpful as you discuss your wishes with your family and health-care providers and write them down. Many people are here to help you. If you or your family have questions or concerns about CPR and other treatments, we want to help you get your questions answered. What is a Code Cardiopulmonary Resuscitation (CPR) In the hospital, when a patient s heart or breathing stops, a code is called. During a code, many different emergency procedures such as CPR, breathing tubes and electric shocks may be needed to sustain life. During CPR, the person s chest is compressed to help the heart pump blood. Oxygen (air) is given through a breathing mask or by mouth-to-mouth breathing. All of the organs of the body, especially the brain, need blood and oxygen to survive. Organs become damaged without oxygen. Sometimes, even with the best treatment, a person may be too ill to recover. For someone with serious life limiting illnesses, CPR is not medically appropriate. Complications Administering CPR and other emergency measures can cause complications. Common complications include: Broken ribs or a sore chest Brain damage from lack of oxygen or blood flow to the brain while the heart was stopped Puncture of the lungs from broken ribs or procedures How will the possible complications affect my ability to function? 7
2 The Success of CPR Survival Studies have shown that less than 20 percent of people who receive CPR survive to hospital discharge. CPR and other emergency treatments may restart heart beat and breathing but they will not correct the diseases or problems which caused the arrest or reverse brain damage. The more often a person needs CPR the less likely it is that the person will recover. Younger and healthier people may have a better chance for recovery. How do I fit this description? What would my chances of recovery be after CPR or other treatments? Will there be an effect on my ability to function? Intubation and Mechanical Ventilators A ventilator does not cure a diseased or damaged lung. It can support the body. If the person does not quickly begin to breathe on their own, then a tube is used to get oxygen into the lungs. An endotracheal (EN-DOE-TRAY-KEY-EL) tube is passed through the mouth or nose and into the trachea (windpipe). The tube is connected to a ventilator (respirator or breathing machine) which helps the person get oxygen. A ventilator can do all or some of the work of breathing. When a ventilator is needed for more than a short time, then the endotracheal tube must be replaced by a tracheostomy (TRAY-KEE-OS-TOE-ME) tube. This means that a small incision is made in the neck and a breathing tube is inserted into the throat. This is done for the person s safety and comfort. As a person begins to breathe again, the amount of air and help given by the ventilator is decreased. This is called weaning. Sometimes the weaning process is slow. Other times a person may be too ill to be weaned. Would I want to be on a ventilator if I could get better? Would I want to remain on a ventilator the rest of my life? Emergency Medicines and IVs Antiarrhythmic (ANTI-A-RITH-MIC) medications help to control heart rate. Vasopressor medications can help increase blood pressure if it goes too low. Medications are adjusted (titrated) as the patient s condition changes. IV is an abbreviation for intravenous or into the vein. One or several IV lines (small tubes) may be needed. Some patients need a large IV line placed into the big vein located in the neck (jugular), near the shoulder (subclavian), or in the groin (femoral). These are called central lines and are used to give medicines and blood products if needed. Sometimes CPR is needed if the medication alone will not sustain life. Would I agree to emergency IV medicines to save my life? 8
3 Defibrillation and Cardioversion (electrical shocks) The heart has its own electrical and nervous system which controls the heart beat. With each beat of the heart, blood is pumped throughout the body. You can feel this pumping if you check your pulse. Sometimes the heartbeat can become very fast and/or irregular. When this happens the heart cannot pump enough blood. Defibrillation (DE-FIB-RIL-A-SHUN) and cardioversion (CAR-DEE-O- VER-SHUN) are treatments which may correct some abnormal heart beats. During these treatments electrical paddles are placed against the chest and a shock is given. The patient is either not conscious or sedated and is usually not aware of the shock. Sometimes the skin gets a burn similar to sunburn when this treatment is used. Would I agree to defibrillation or cardioversion if it might correct the problem? Pacemakers The heart has a bundle of nerves that start its beat when life begins and continues throughout life. Sometimes these nerves stop working properly and the heartbeat must be started by a pacemaker. The pacemaker uses energy from a battery to send an electrical signal to the heart. This signal causes the heart to beat. It is different from the shock given for defibrillation or cardioversion. Pacemaker signals usually are not felt by a person. A pacemaker may be temporary or permanent. A temporary pacemaker uses pads on the chest or a wire passed through an IV into the heart to deliver the signal from a battery. This battery is outside of the body. If a pacemaker is needed permanently, then a small unit is inserted surgically just under the skin of the chest or abdomen. Would I agree to an emergency pacemaker? Blood and Blood Products Blood is necessary for life. Blood carries oxygen to the cells, helps fight infection and enables our bodies to heal from some types of injuries. Blood and blood products, such as proteins and clotting factors, may be needed when a person is sick. All blood and blood products are carefully screened, but there can be no guarantee about their safety. It may be possible to donate your own blood or have family members donate blood for you. This needs to be planned well in advance. Do my religious beliefs prohibit me from getting blood or blood products? Kidney Machines Sometimes the kidneys are not able to remove the waste and water from the body. Dialysis (DIE-AL-I-SIS) is a treatment to remove waste and water. The most common type of dialysis is hemodialysis (HEEM-O-DIE-AL-I-SIS). During hemodialysis, the blood is passed from the body through special needles or catheters (sometimes called Permacaths or Quintons ) to filters in the dialysis machine. The filters remove the waste. The procedure takes about three hours and must be done several times each week. How would I feel about kidney dialysis? Another type of dialysis is Peritoneal Dialysis. A tube is inserted into the abdomen. Dialysis Fluid is passed through the tube and into the abdomen and waste is removed. 9
4 Foods and Fluids Food and fluids may be given by IV or directly into the stomach through a feeding tube. Nutrition given by IV is called TPN (total parenteral nutrition) and lipids (fats). Sometimes a person is unable to swallow properly and, as a result, food and fluids enter the lungs. This may occur due to weakness, or effects of stroke, injury or serious illness. There are different types of feeding tubes. The most common is called a nasogastric (NAZ-O-GAS- TRICK) or NG tube. This narrow tube is passed through the nose or mouth and down the swallowing tube or esophagus (EE-SOF-a-GUS) and into the stomach. The food given through a feeding tube is similar to baby formula. If a person must be fed through a tube for a longer time, then the tube is placed directly into the stomach through a small surgical incision. This is called PEG (Percutaneous Enteral Gastrostomy) tube. Lack of appetite and lack of thirst are a natural part of the later phases of an incurable illness as the body slows down. If food and fluid are forced into the body as it is slowing down then the person may experience discomfort. There may be swelling, lung congestion, bloating and/or vomiting. IV nutrition and tube feedings can be stopped at any time and may need to be stopped if the person is experiencing discomfort or complications which are not easily corrected. Would I agree to IV nutrition and feeding tube? If I was very sick and not expected to get better, would I want tube feedings or IV nutrition? Pain Control Each of us has a different view about pain. Some people believe that pain and suffering is acceptable. Other people believe that pain is not acceptable and should be treated. Pain and suffering may be physical, emotion and/or spiritual. There are many different ways to promote comfort depending upon the cause of the pain. Medications can be used to decrease pain. Some pain medications may make a person sleepy and may also decrease blood pressure, heart rate and breathing. A person may also find comfort in having family/friends present, seeing or holding familiar items, smelling certain fragrances, being massaged, praying, talking, meditating, reminiscing, eating special foods, being held or visualizing happy times and places. Is it important to you to be free of pain, even if pain medication would make you less aware or would decrease your blood pressure, heart rate and breathing? What makes you feel comforted? Hospice and Palliative Care Hospice and Palliative Care provide comfort and support for patients who have life limiting illnesses and their families. More information can be found at and 10
5 Your Voice - Your Choice: Advance Directives Sometimes the burdens of treatment outweigh the benefits. Some patients and families may not wish emergency measures to be taken in the event of a code or may want to limit certain treatments. You can make your wishes known by writing an advance directive. Your doctor can write orders to make certain that your wishes are carried out. Unless you tell us otherwise, in the event of an emergency, we will provide CPR and other emergency treatments. You should have an advance directive that clearly states your wishes. There are two basic types of advance directives: the Patient Advocate Designation (PAD) for Healthcare Decisions (Durable Power of Attorney for Healthcare) and a Living Will. In a Patient Advocate Designation (PAD) for Healthcare (Durable Power of Attorney for Healthcare), you can state your care choices and name a friend or family member to make certain your wishes are carried out in the event that you cannot speak for yourself. Remember to update your forms when your Advocate and/or wishes change. A Living Will allows you to state your care choices; however it does not give anyone authority to speak on your behalf. The Patient Advocate Designation (PAD) for Healthcare is the preferred type of advance directive in Michigan. We need to know your preferences for treatment. Are your wishes clearly stated? Are they in a form considered legal in this state? Do your family and doctor know that this document exists? Do you update your forms when your Advocate and/or wishes change? Have you written this information down so that your choices will be honored? You can obtain forms which you can complete by yourself from your hospital. The hospital can also refer your to other resources. An Advance Directive is the greatest gift to yourself and your family! For more information about Advance Directives call
6 What are your wishes? Do you understand what would happen if you did not want CPR or other treatments performed? Would you want the doctors and other health care providers to try some, but not all of the treatments? Are there treatments you would want tried if your could get better, but not continued on forever? What are your personal values? What is important to you in your life? To what extent would you want to be kept alive by machines? How important is it to be kept free of pain? How important is it to prolong your life if you will not get better? Adapted from Your Family Matters, Oakwood Healthcare System, , 2001, 2004, 2006 This book has been made possible through funding from the Oakwood Hospital & Medical Center Guild and Auxiliaries affiliated with Oakwood Healthcare System, the American Association of Critical Care Nurses and private contributors. Contents designed and written by Gail Daly, RN, MSA, PhD. Christine Westphal, MSN NP ACNS-BC ACHPN; and J. Kay Felt, JD. 12
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