A Guide to Compassionate Decisions At Companion Hospice We Are Dedicated to Enhancing the Quality of Life Enhancing the Quality of Life
A Guide to Compassionate Decisions Throughout most of our lives, medical decisions are simple. You get sick, your doctor orders a treatment, and you get well. When you or your loved one is diagnosed with a life-limiting illness, the decisions become more complex. Medical science today has advanced so far that these illnesses have many more treatment options. The best path is no longer clear. Treatments now have possible good results but also can have very negative effects. Your upbringing, your faith, your moral compass, and that of your loved ones now weigh in on everything you decide to do. The best solution is for all of us to sit thoughtfully and document our wishes for care before we are no longer able to make our own choices. However, this does not happen often. This booklet is intended to help loving families to understand and carry out your wishes for care and treatment. Participate as much as you are able to or care to. Appoint someone and grant that person permission to arm themselves with knowledge and make decisions if you are not able. If you are the exceptional individual who will make ongoing decisions, relax. That may seem illogical, but it is not. Here is the truth to write on your mirror and read every day: Choices made with love as the guiding factor are never wrong. As the decision maker, keep your loved one in the front of your mind as you consider the options. This will help you maintain focus with all the noise around you. The only mistake you can make now is not making a choice. Without guidance, the physicians and nurses are bound by laws and license practice as to what they can do. The medical team may not make choices based on what is right for your loved one, but on the many other different societal and public pressures put on physicians and care teams. Let s look at some of these choices.
The Goal of Care To begin thinking about life-prolonging medical procedures, the goal of care must first be established. What outcome are you and your loved one trying to achieve? 1. Cure: Most healthcare today is directed toward the prevention or cure of the disease. The first-line cancer treatments are an example of this. Treatment is aimed at curing the disease. 2. Stabilization: Many diseases cannot be cured, but medical treatment can provide symptom control or stabilization of the disease processes. Diabetes is an example. Insulin is the stabilization treatment. 3. Palliative or comfort care: The goal of this care is to keep the person comfortable with the symptoms under control. It is understood that a cure is not possible. Medical care is geared to provide maximum symptom relief and allow the person to live as normally as possible at home. This care is generally provided by a trained palliative or hospice team. 4. Hospice: This level of care is to assist the person and the family in preparing for a comfortable and dignified death. A qualified and trained hospice team provides this care also. Discuss these goals with your loved one, family, and others who will help during this period. Find out which goal best fits your loved one s situation at this time. The choices you and your loved one make can always be changed. What seems right today may change tomorrow. But enter into this challenge making the best choices you can for the long term. Please allow the hospice team to help you talk to your loved one and family and share the burden.
Cardiopulmonary Resuscitation (CPR) Originally, CPR was intended for use in accidental deaths, such as drowning or electrical shock, or when an otherwise healthy person experiences a heart attack. CPR offers a hope of survival when every effort should be made to save a person s life. However, for people with multiple medical problems or a terminal disease, CPR offers little medical benefit. In cases such as these, many people choose not to have CPR. When you call 911, everything possible will be done to resuscitate your loved one. CPR will continue until your loved one is transported to the hospital, where the hospital staff will attempt further life-saving measures. Studies have shown that in the elderly population with at least 1 chronic disease, CPR is successful in about 2% of the cases. For people who are elderly or terminally ill, CPR has many negative consequences, such as broken bones, punctured lungs or spleens, or permanent damage to the voice box and the airway. Brain damage generally occurs. CPR significantly reduces the possibility of a peaceful death.
Artificial Ventilation There are many good reasons for ventilator care. Ventilators, or respirators, are used to artificially breathe for a person. This time allows an otherwise healthy body to heal enough to breathe on its own. These machines have saved many lives. The teenager who tries to commit suicide by pills can be ventilated until the liver clears the toxins. The drowning victim can be ventilated until the lungs are clear of the water and breathing can begin on it s own. These are success stories. For people who are elderly or suffer from chronic or terminal disease, the results from artificial ventilation are much different. If they survive and can be taken off the ventilator, they often suffer from bedsores, bleeding from the nose and mouth, difficulty swallowing, and severe sore throat pain. Once a ventilator is placed on anyone who is elderly or seriously ill, it can be difficult to stop. These people may never be able to breathe on their own again. In such situations, many loving families often hope and pray that their loved ones don t wake up and just pass away while on the vent.
Artificial Nutrition The natural order of things is for people to ask for food when they are hungry and water when they are thirsty. Sometimes, feeding through a nose tube or a vein (IV) for a short period can help get people back to eating by mouth. Feeding tubes have proven beneficial to many people. Occasional use of a feeding tube or IV can greatly help people with Crohn s disease and other diseases of the digestive system Some say a feeding tube should always be used because food and water should not be denied to anyone. The thought is that without tube feedings, their loved one will be starving. Tube feedings do have a downside for a majority of people. Aspiration (take the feedings into their lungs instead of their stomach) is a huge concern. This can cause choking and lead to pneumonia. Also, the tube is uncomfortable in the nose. Surgery may be needed to put the tube directly into the stomach. Tubes often get coughed out or choked out and need to be replaced. Our bodies have been equipped with a wonderful defense mechanism. When we can no longer safely eat, we stop being hungry. The natural progress of the disease severely decreases the need for calories. Feeding tubes bypass the body s natural defenses. The tubes can then be used to force food into bodies that can no longer metabolize or break down the food into energy the body can use. Many people suffer bowel obstructions because their bodies cannot metabolize the food, and it just sits in the intestines and cannot move. Tube-fed patients aspirate and ultimately die about 58% of the time.
Artificial Hydration Some folks choose to receive extra fluids through artificial (Intravenous) hydration. Some people benefit from IV fluids. IV fluids have no calories. Artificial hydration is like drinking a glass of water, as long as all other body systems are functioning well. People can get dehydrated for many reasons. Certain tumors cause the body to relocate fluid into body cavities that cannot use it. In these cases, additional fluid will go directly to the abdomen or lungs and cause additional suffering and hasten death. As a normal course of the disease process, a person will not feel hungry or thirsty. Fluids may help the person be more alert for a short period of time. Families often try and use IV fluids to keep a loved one awake until a certain event occurs, such as the arrival of a family member. Wounds and bedsores use a lot of the body s fluids, thus causing the body to become dehydrated. A person who is alert and comfortable, but unable to drink enough water to rehydrate, may benefit from additional short-term fluid. As with artificial feeding, artificial hydration does have some very real downsides. Generally if a person is unable to swallow water because of weakness from the disease process, then artificially forcing fluids is risky. By bypassing the body s natural mechanisms, artificial hydration can force more fluid into the body than it can use. The body may become overloaded with fluid. The extra fluid has to go somewhere. Usually it goes into the lungs, the abdomen, or the fragile sac around the heart. Families can easily shorten a life when they are trying to do just the opposite. This is a hard concept to believe: Giving your loved one additional water, when he or she cannot drink may actually hurt them. Feeding and fluids are, by far, the most difficult subject for loving families to confront. Personal culture, faith, ethnicity, and social background often outweigh the facts in these choices. Your hospice team can help you and your family wrestle with these choices. The hospice has chaplains available to assist with questions of doctrine and faith. The hospice physicians and nurses can counsel you and your family about the pros and cons of tubes. As with all of these difficult decisions, it is better to arm yourself with knowledge and make your choices before a choice needs to be made. Remember what is written on your mirror: Choices made with love as the guiding factor are never wrong.
Hospitalization Many people think the best place to be when illness sets in is in the hospital. Studies have shown that this is often not the case. People absolutely should be in a hospital if they had a car accident or suffer from a curable disease that needs immediate attention and monitoring. When a person is terminally ill with a disease progression, studies suggest that a hospital may not be the best place to be. Often loving families become alarmed when their loved one s condition declines sharply at home. If pain or symptoms become out of control, many families think that their loved one will get faster intervention in a hospital. Time after time with proper information and guidance, family members can assess problems earlier and intervene to solve problems faster than a group of doctors and nurses that are new to the case and must catch up. Hospitalization may be the answer in some cases. Your hospice doctors and nurses can guide you in determining whether or not your loved one should be hospitalized. The burdens that come with hospitalization need to be considered in this decision. For example, a hospital environment increases the risk of acquiring a life-limiting infection. Your loved one may have to endure painful diagnostic tests. Also, the side effects of additional medications can increase the strain on a fragile body. A substantial burden is the fear and anxiety of being transported to the hospital and the discomfort of being there. All of these burdens need to be weighed against the possible benefits. Consider your goal of care. Is your goal to keep your loved one comfortable when a cure is not possible? Your hospice doctors and nurses can help you get the symptoms under control. If some testing is needed, the hospice team will provide the testing at home, where your loved one can be surrounded by family. The strength of the family must be channeled for your loved one s comfort and peace at this time.
Antibiotics Before the 1950 s, infections caused most deaths in North America. Antibiotics changed all of that. Many infections can now be cured. Throughout most of our lives, we routinely take antibiotics with success. Hospice routinely treats some infections. A urinary tract infection can be painful. The hospice team can diagnose and treat a UTI for this reason. This is an obvious example of when antibiotics should be used. An infected wound may also be less painful with the use of an antibiotic. However, the decision to use antibiotics on wounds is less clear-cut. With the disease using most or all of the nutrition that is put into the body, most wounds will not heal with or without antibiotics. A recurrent problem for many people with a debilitating, life-limiting disease is congestion. If bacterial pneumonia is causing the congestion, antibiotics may cure the first case your loved one gets, but not when it returns. Also, not all congestion is due to bacterial pneumonia. More frequently, congestion is caused by the advancing disease, not bacteria. In this situation, antibiotics will have no effect on the congestion but may cause unwanted side effects, such a vomiting or diarrhea. A body ravaged by disease loses its ability to fight off infections and other diseases. We often hear the phrase old ladies best friend when talking about pneumonia. This means that often pneumonia provides a peaceful and calm sleep into death. The decision to use an antibiotic or not should be made at each infection. The hospice nurses and doctors can provide information about the effectiveness of an antibiotic in each case. Weigh the pros and cons as a family.
Compassionate Decisions Nothing in this booklet is easy. Every family and every person has a different view of the correct answer. The correct answer may change as the disease progresses. What is right for one person is not right for another person. Your hospice team is committed to walk this path with you. We will not run ahead or lag behind. You will know what is right. Hospice will help you. Here are a few truths: Your loved one will pass away with or without CPR. Your loved one will pass away with or without feeding tubes and IVs. Your loved one will pass away with or without antibiotics. Your loved one will pass away at home with family or in a hospital. There is no right or wrong answer. Back to your bathroom mirror: Choices made with love as the guiding factor are never wrong. This is your peace. God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. The Serenity Prayer, author unknown
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