Your Personal Health Care Choices Advance Care Planning Your Personal Health Care Choices SCRIPT Welcome, my name is (your name here) and I am here to help you and your family plan for your future health care needs. I am a (your occupation here) and I have a personal and professional interest in this topic. I am one of the Advance Care Planning specialists at (facility in which you are working). We are concerned that patients and their families may at times be overwhelmed with difficult medical decisions without proper advice or advance preparation. Today, I will present information on advance care planning, health care choices, and Advance Directives. The information I will present to you has been prepared by experts in Internal Medicine, Geriatrics, Medical Ethics, Palliative Medicine, and law. This program will give you the tools and guidelines necessary to become prepared, in the event you should become seriously ill and not able to communicate your wishes. SPEAKER’S NOTES This material is designed to help in the process of Advance Care Planning. Suggested script is printed in bold. It is a guide for conversation. It should be used only by those trained to use it. It may be used either one on one or in a small group setting. You might use a personal experience involving the death of someone you knew or the following additional script as you get started: One hundred years ago, the average age of death in America was 46, and most people died at home. Today, average life expectancy is 78 and 80% of us die in hospitals or nursing homes. Did you know that 80% of deaths in hospitals and nursing homes are preceded by a decision to limit one or more life sustaining treatments? That might surprise you because Medicine has never had greater powers to sustain life, but should doctors and nurses always do so? What if, from the patient’s view, the quality of life saved is very poor? Your Nursing Home and TXPEC

Case Presentation #1 Mrs. Anderson is an elderly widowed nursing home resident who falls and breaks her hip. After surgery at the hospital, she has a heart attack, she is resuscitated, and she is placed on a breathing machine in the ICU. After two weeks, she remains unresponsive on the machine and her condition continues to deteriorate despite maximum medical treatment. Her physicians feel it is time to allow a gentle and peaceful death. Her family knows nothing of her wishes about further treatment in such circumstances, as she had never discussed an advance care plan nor completed an advance directive of any sort. SCRIPT I want to start by sharing a few clinical cases with you. As you listen to these cases, try to imagine how you would feel and react to the circumstances if this type of case happened to you or a loved one. Read the case. Let me ask you…, if you were Mrs. Anderson ………. …would you want your family to continue all treatments? …would you want some treatments continued and not others? …would your family know your wishes in this case? …could your family overcome the conflict if two or more family members disagreed with each other about your treatment? Let’s look at another case. SPEAKER’S NOTES After reading the case, ask the questions slowly, pause and give the participant time to think and respond. If participants seem uneasy or frightened, acknowledge that it is a little scary to think about such difficult questions, but you believe it is very important to do so.

Case Presentation #2 Mr. Smith is a nursing home resident with dementia. Two years ago he was very active, able to recognize and interact socially with friends and family. Since then, he has gradually declined and no longer recognizes his family, he is unable to speak, and he is bed bound. He is now incontinent, has difficulty swallowing, often refuses to eat, and has been hospitalized several times in the last 6 months for pneumonia and dehydration. Each time he is treated and then returned to the nursing home where he further declines. Should he again be treated for pneumonia. Should a “feeding tube” be placed? When his heart stops, should doctors attempt to restart it and support him with machines? SCRIPT Read the case. Again, let me ask you to personalize this case. If you were the patient described: Would you wish to be kept alive in this condition? Or, would you prefer that your doctor’s and nurses maintain your dignity and your comfort, allowing you to die peacefully? These can be difficult questions to answer if you have not thought about them in advance or if your family has not done so and does not know your wishes. The answers to these questions are very personal. Quite frankly, human illness is tough enough as it is without the emotional chaos that can surround unplanned for life and death decisions. These type of circumstances can happen to any of us and it really creates a dilemma for all involved. SPEAKER’S NOTES Be prepared for someone in the audience or the individual patient and their family members to relate similar stories or experiences. This can be very effective if you have the time. If you do not have the time for this, be prepared to move the program along. For example, you might say: “I am sure many of you have experienced something similar to this or know someone who has. Let’s go on and discuss how this could have been prevented.

The Dilemma Who should make decisions for these terminal or irreversible patients and what should they decide? These patients can no longer speak for themselves or make their wishes known. Their children and physicians must guess the patient’s wishes for treatment. This can be emotionally trying for all involved. If there are several children, they may not all agree. Indecision and confusion may last for days or even weeks. There is a better way - Advance Care Planning and the use of Advance Directives SCRIPT Let’s go on and discuss how circumstances like that of Mrs. Anderson and Mr. Smith can be prevented. Prevention starts with asking questions such as: Read the slide.

What is Advance Care Planning? Advance Care Planning is: A process for directing treatment at a time in the future when you can no longer make your wishes known Ideally initiated while the patient is of sound mind and not under stress A dialogue between patient, family, and health care providers A process that may conclude with legal documentation known as advance directives SEAKER’S NOTES Read the slide.

Why Should You Participate in Advance Care Planning? To discover your beliefs and values about life, death, and health care choices. To inform others of your beliefs, values, and wishes. To document your health care choices. To decrease conflict and court battles. To ensure your wishes are respected. SPEAKER'S NOTES Read the slide. Elaborate on these points as time permits. Use personal anecdotes to emphasize the importance of each point.

Advance Care Planning 5 Step Process: Exploration of beliefs and values Knowledge of health care choices Discussion with family and physician Completion of Advance Directives Informing others of my choices SCRIPT Let’s look at Advance Care Planning in a little more detail. Advance Care Planning is a process that includes part or all of these 5 steps: Step 1 Explore your own beliefs and values. A value is an “enduring belief that a certain type of behavior or a certain condition of life is desirable.” I like to think of values as guides to decisions in life. Step 2 Knowledge of health care choices Health care choices are the medical treatments you would or would not want in certain conditions. Step 3 Discussion with family and physician This may be the most difficult step for some people, yet the most crucial for making your wishes known Let’s be honest, it is not so easy to talk about unpleasant things like sickness, death, and dying, and yet, these are inevitable events for all of us. Most patients and families find it a great relief once they “break the ice” and begin discussions about life and death issues. Step 4 Completion of Advance Directives Advance directives are legal documents that comply with state law. They include: Medical Power of Attorney Directive to Physicians and Family (otherwise known as a “living will”) Out-of-Hospital DNR We will cover each of these in more detail later. Step 5 Informing others of my choice Getting the copies to the correct health care providers, family members and your spokesperson.

Step #1: Explore Beliefs & Values We all want to live, but we all understand that sooner or later, we all die. Curing illness is the primary goal of medicine, but many medical treatments given to patients with terminal or irreversible conditions often cause suffering that may outweigh the benefit of being kept alive. Ask yourself, “If I become terminally or irreversibly ill, how much value do I place on extending my life as opposed to the quality of my life? SCRIPT Let’s look at each step in more detail. Read the slide. SPEAKER’S NOTES This should be a dialogue between patient (if able), family, and providers. Encourage this dialogue but also point out that is a dialogue that the patient and or family may wish to continue later. They do not have to resolve all issues at this time.

Step #1: Explore Beliefs & Values These are difficult questions that may be frightening to some and yet when faced, the answers can bring peace of mind. These questions are best faced with careful consideration and not in a crisis situation! In order to answer such questions, we recommend consideration of the burdens of treatment versus the benefit that the treatment will provide. SPEAKER’S NOTES Read the slide. Allow dialogue as desired by the participants.

Step #1: Explore Beliefs & Values Consider what basic life qualities are important to you. For example: How important is your independence and ability to feed, walk, and otherwise care for yourself? Some individuals who are chronically dependent as a result of illness prefer comfort care only to life sustaining treatment should they become critically ill. How important to you is it that you be able to recognize or respond to your loved ones? Some individuals would prefer not to be kept alive if they were comatose or otherwise unable to interact with their loved ones because of sickness. SPEAKER’S NOTES Read the slide. Allow dialogue as desired by the participants.

Step #1: Explore Beliefs & Values Personally consider which burdens of treatment you would be willing to bear in order to live a life acceptable to you. For Example: Would you want to be kept alive by a mechanical breathing machine, knowing that you could not talk, would be restrained, and might be uncomfortable as a result of the machine? If you were no longer able to swallow, would you wish to have a tube surgically placed in your stomach? Would it matter to you if you no longer recognized your family because of dementia or coma? Would you wish to be transferred to the hospital for intensive medical treatment if your doctor found you to be terminally or irreversibly ill, or might you prefer to be kept comfortable? SPEAKER’S NOTES Read the slide noting that if you are talking about a patient with their family, please substitute the words, “your loved one” or “they” for the pronoun “you”. For example, “Would your loved one want to be kept alive by a mechanical breathing machine, knowing they could not talk, they would be restrained, and they might be uncomfortable as a result of the machine?””

Step #2: Know Your Health Care Choices There are three basic choices concerning the level or intensity of your treatment: Palliative Treatment, often called “Comfort Treatment Only” Limited Life Sustaining Treatment Intensive Life Sustaining Treatment Make your choices based upon the benefits and burdens of treatment. SCRIPT (Read the slide first) There are many treatments to choose or refuse in the course of an illness. We recommend making that choice based upon the probable benefits and burdens of the treatment. I will give you more information later and your physician may as well to help you understand in detail the particular benefits and burdens of specific health care choices. I want to talk to you about the general concept of benefits and burdens of treatment. The general benefits of treatments, when they are effective, include remission or cure of the illness and hopefully the ability to further enjoy life. Unfortunately, most treatments impose burdens of some sort. Burdens may include physical and psychological suffering, social concerns such as cost and family stress, or even spiritual travails. How you rate the relative benefits and burdens of living with illness and the treatments that illness requires if it is to be overcome should guide your personal decisions.

Step #2: Know Your Health Care Choices Palliative or “Comfort Treatment Only” The goal of this type of treatment is to keep you comfortable and to allow a peaceful death. You will be kept pain free and your dignity will be maintained at all times. Only medications needed to maintain your comfort will be provided. Tests will not be ordered unless needed to help manage your comfort medications. Intravenous lines are only started if needed for comfort. You will be moved to the hospital only if your doctors and nurses are unable to keep you comfortable in your home. SCRIPT Let’s talk a little more about the three basic levels of treatment. Read the slide.

Step #2: Palliative or Comfort Treatment Only This treatment addresses the major elements of suffering including physical, mental, social, and spiritual. For example, relief of pain, shortness of breath, and nausea are major goals. SPEAKER’S NOTES Read the slide.

Step #2: Palliative or Comfort Treatment Only Palliative treatment is often provided by a Hospice organization. Hospice organizations focus on total patient comfort, the care of the patient and family as a unit, and provides grief and bereavement support. Palliative or hospice treatment may be provided in the nursing home, home, or hospital if needed. SPEAKER’S NOTES Read the slide.

Step #2: Know Your Health Care Choices Life Sustaining Treatment: Texas law defines life sustaining treatment as “a treatment that, based on reasonable medical judgment, sustains the life of the patient and without which the patient will die. The term includes both life sustaining medications and artificial life support such as mechanical breathing machines, kidney dialysis treatment, and artificial nutrition and hydration.” Life sustaining treatments may be either limited in specific ways based upon your medical condition and values, or may be intensive and unlimited. SPEAKER’S NOTES Read the slide. Note that this is the legal definition of a life sustaining treatment under Texas law.

Step #2: Know Your Health Care Choices Limited Life Sustaining Treatment Depending upon your condition and your values you may: Be transferred to the hospital or remain at your home Have a trial of appropriate life sustaining drugs, such as antibiotics for infection, either by mouth or by intravenous route “Artificial Life Support” such as cardiopulmonary resuscitation (CPR), breathing machines, blood transfusions, or “Feeding Tubes” are generally not given for this level of treatment . If they are used, it is for a short period of time to determine whether or not they are medically effective, or effective in meeting your values. This is sometimes called a “time limited trial.” SPEAKER’S NOTES Read the slide.

Step #2: Antibiotics and Other Limited Life Sustaining Treatments Benefits Treats infection or other life threatening condition Burdens May require IV access May cause unpleasant side effects May require restraints Effectiveness Varies with underlying condition and treatment used SCRIPT (Read the script first.) Antibiotics are medications that treat infections. They can be administered in a variety of ways. Other Limited Life Sustaining treatments might include intermittent (as opposed to continuous) oral or intravenous medications needed to maintain life. Burdens may include cost, specific drug side effects, and intravenous access. This person is receiving antibiotics given in the vein.

Step #2: Know Your Health Care Choices Intensive Life Sustaining Treatment Transfer to the hospital with possible admission to the ICU if medically appropriate. Intravenous therapies, mechanical breathing machines, artificial nutrition and hydration (ANH), surgery, blood transfusions, dialysis and cardiopulmonary resuscitation (CPR) may be used as appropriate for your particular condition. SPEAKER’S NOTES Read the slide.

Step #2: Artificial Nutrition and Hydration - “Feeding Tubes” Benefits Provides fluids and nutrients Potentially life-sustaining in some conditions Burdens Invasive and painful Aspiration of formula into the lungs Patients with tubes are usually restrained Effectiveness Ineffective in the setting of dementia and cancer. Does not prevent aspiration SCRIPT (Read the script first) Artificial nutrition/hydration has the ability to prolong life in some circumstances by providing liquids, calories, and minerals needed to maintain internal bodily functions. Artificial nutrition and hydration can be temporary or permanent. Artificial nutrition is most often delivered via a tube to the person The tube is passed through the nose, throat and into the stomach. For long-term needs, a tube goes through the skin into the stomach and is connected to a container of artificial nutrition. Burdens: a tube in the nose can rub and make a sore, it can also make swallowing and speaking difficult, stomach tubes can become infected. Let’s be honest. It is hard to consider not receiving “food and water” and yet, experts in geriatrics, palliative medicine, and medical ethics all will tell you that withholding artificial nutrition and hydration is not starvation! Did you know that critically ill and dying patients are rarely hungry or thirsty and when they are, they want comfort foods that they can taste, not a chemical mixture dripped into their stomach? In fact, artificial nutrition and hydration has not been shown to prolong the life of patients with advanced dementia, cancer, or advanced organ failures. Major professional societies concerned with the care and treatment of the elderly or of patients with serious chronic diseases such as dementia recommend against artificial nutrition and hydration as a routine chronic treatment.

Step #2: Breathing Machines Benefits Life-sustaining Burdens Invasive and painful due to tube in throat Side effects include agitation requiring sedation or restraint, inability to talk Requires ICU treatment and restricted family access Effectiveness Varies with underlying condition SCRIPT (Read the script first) This is a breathing machine. Breathing machines are called ventilators. They may be used for a short time (hours to days) while a patient recovers from pneumonia or surgery, or they may be used for longer times such as weeks to months or even years! They push oxygen and air into a persons lungs through a tube. Burdens include: Not being able to speak or eat while the tube is in the nose or throat, The patient may need to be restrained to keep them from removing the tube, The person may develop sores in the nose, mouth, or throat from the tube. Long term ventilation may require a tracheostomy, which is a hole in the neck through which the person breathes, Lung infections can occur.

Step #2: Kidney Dialysis Benefits Cleans blood Life-sustaining Burdens Time consuming Requires transfer to dialysis center by ambulance Invasive and painful Side effects such as fatigue, weakness, and nausea Effectiveness Varies with underlying condition SCRIPT (Read the script first) This is a kidney dialysis machine. It cleans the blood when the kidneys fail. This treatment requires that large tubes be inserted into large blood vessels in the body. These tubes are then attached to the dialysis machine. Dialysis is usually a four-hour treatment, three times a week, but sometimes is needed daily. If the kidneys fail and don’t recover, this condition is called Chronic Renal Failure and dialysis will have to be performed indefinitely. Common problems experienced can be a loss of appetite, anemia which may require blood transfusions, dry and itchy skin, fatigue, change in behavior, and high blood pressure. Patients must always be near a dialysis center. Chronic dialysis usually requires one or more surgeries to establish a place where the machine can be connected easily to the body. SPEAKER'S NOTES You may be asked if once dialysis is started, “Will it always be needed?” Dialysis can be short term, while the kidneys recover from a reversible disease or injury. This is called Acute Renal Failure. Or it can be forever, as in the condition called Chronic Renal Failure or End Stage Renal Disease.

Step #2: CPR - Cardiopulmonary Resuscitation Benefits May revive breathing or a heart that has stopped Burdens Injury common Invasive and painful - tubes, IV lines, electric shock, ICU Effectiveness Less than 15 - 20% effective in restarting heart Less than 1 out of 100 patients survive to hospital discharge and those patients have high risk for permanent brain injury SCRIPT (Read the script first, then read the slide.) This is Cardiopulmonary Resuscitation or CPR. CPR in the nursing home is not like what you see on dramatic television shows such as ER! CPR is an emergency treatment designed to revive a person who has died, a person whose breathing and/or heart has stopped. It involves forceful compressions to the chest, electrical shocks, IV and even intra-cardiac injections, and mouth to mouth respiration - bag to mouth respiration - or insertion of a tube in the windpipe to deliver oxygen. CPR is notoriously ineffective in the nursing home setting and in the frail elderly patient. Even when CPR is done correctly, patients may have ribs broken, skin bruised and suffer other injuries. If a person was without oxygen for longer than a few minutes, brain damage usually occurs. The most common outcome of CPR in the nursing home setting is immediate death with failure to restart the heart. In a few cases the heart may be restarted but the patient winds up in the hospital ICU, on a ventilator and comatose. Such patients may survive in the ICU for some time longer, but they are not conscious and they rarely if ever even return to the nursing home. In essence, the CPR does not so much prolong life as it prolongs the dying process over many days, weeks, or even months!

Step #3: Discussion with Family, Physician, or other advisers This step is essential. It may be very difficult for some people. Discuss with your family and physician. You may also want to discuss with your spiritual adviser or attorney. Ask your family and physician to respect your health care choices. SCRIPT (Read the slide first) Bringing this topic to your family for discussion is crucial and may be very difficult for some people. Your physician can explain and clarify the benefits and burdens of treatments in relationship to your current state of health or illness. It is important to share your beliefs and values with others, especially your family and physician. Reassure your family that you are OK now, but you want to plan for unexpected illness or injury. SPEAKER'S NOTES Encourage participants to pick a specific time and place to speak with family members. Suggest that they may want to speak with their physicians first to be sure they understand the benefits and burdens of of the different medical treatments. Family members may not want to talk about the death of someone they love. Remind participants that of how important it is that family members are aware of their wishes so that they will be carried out.

Step #4: Complete Advance Directives Three important types of Advance Directives under Texas law: Directive to Physicians and Family Medical Power of Attorney Out-of-Hospital DNR SCRIPT (Read slide first.) State laws vary, this program is designed for the State of Texas. There are four legal documents defined as Advanced Directives but in this program I will discuss only three of them.. Directive to Physicians and Family Medical Power of Attorney Out of Hospital DNR Advance Directives are documents that encourage people to think and talk about the care they want at the end of life. You are not required by law to complete these forms. They apply only to health care decisions, not financial matters, and become effective only when you can not communicate or make your own health care decisions. By federal law, health care providers are required to inform you of the right to complete Advance Directives. You do not have to see a lawyer to complete an Advance Directive, but if you have any legal questions you should ask a lawyer to explain it. If you need more information about the fourth type of advance directive under Texas law, the Declaration for Mental Health Treatment, please let us know and we will help with that as well.

Step #4: Completion of Advance Directives What is an Advance Directive? An Advance Directive is a legal document, ideally completed by the patient when of sound mind, allowing the patient to direct future treatment at a time when the patient is otherwise unable to make their wishes known. With an Advance Directive you may appoint a “surrogate decision maker” and/or direct specific treatment decisions. An Advance Directive should be the final step in the process of Advance Care Planning. SPEAKER’S NOTES Read slide.

Step #4: Completion of Advance Directives What is a Surrogate Decision Maker, Health Care Agent, or Spokesperson? These terms refer to a person designated to make decisions for you if you are no longer able to make decisions for yourself. You may legally designate this person either on a Directive to Physicians and Family (Living Will) or on a Medical Power of Attorney. Your surrogate or health care agent is instructed by law to make decisions as you would make them for yourself. If you fail to chose a surrogate, state law provides a list of individuals who may make decisions for you. SPEAKER’S NOTES Read the slide.

Step #4: Completion of Advance Directives What is a terminal condition? According to state law, a terminal condition means an “incurable condition caused by injury, disease, or illness that according to reasonable medical judgment, will produce death within six months, even with available life-sustaining treatment provided in accordance with the prevailing standard of medical care.” SPEAKER’S NOTES Read the slide.

Step #4: Completion of Advance Directives What is an irreversible condition? According to state law, an irreversible condition means a “condition, injury, or illness: 1) that may be treated but is never cured or eliminated; 2) that leaves a person unable to care for or make decisions for the person’s own self; and 3) that, without life-sustaining treatment provided in accordance with the prevailing standard of care is fatal.” SPEKAER’S NOTES Read the slide.

Step #4: Directive to Physicians and Family or Surrogates Commonly called a “Living Will” Records your choices in writing Directs the medical care you want to receive or reject in the setting of either a terminal or irreversible condition Becomes effective only when your doctor certifies in writing that you have a terminal or irreversible condition and, you are not able to communicate or otherwise make your wishes known SPEAKER'S NOTES Read the slide first. Emphasize that this is the most accurate way to make your wishes known and insure that they are followed. It represents your instructions to both your physicians and your family. You are the only person who can change your living will. Emphasize that your living will only goes into effect when you can no longer make your wishes known.

Step #4: Medical Power Of Attorney Allows you to appoint a spokesperson (surrogate or health care agent) to make all health care decisions, whether or not you have a terminal or irreversible condition Becomes effective when you become unable to communicate or otherwise make your wishes known Formerly called a “Durable Power of Attorney for Health Care” Your spokesperson is required by law to make decisions in agreement with your values and preferences, thus your spokesperson should be included in discussions related to the creation of this type of document SPEAKER’S NOTES Read the slide. Note that, like the living will, it only becomes effective when you can no longer make your wishes known. Note that unlike the living will, your agent may make all health care decisions for you once you are incompetent, whether or not you are terminally or irreversibly ill. Emphasize the last bullet point, that your spokesperson or agent is required by law to make decisions in agreement with your values, thus the importance of discussing your values with your loved ones, and ideally completing a living will.

Step # 4: Out-of-Hospital DNR Directive DNR means Do-Not-Resuscitate No attempt will be made to restart your heart or breathing when you die - note that it does not mean do not treat for other problems Allows a person to refuse CPR (cardiopulmonary resuscitation) outside of the hospital setting Health care providers and emergency personnel will not perform CPR The only type of advance directive which requires your physician’s signature on the document SCRIPT (Read the slide first.) DNR means Do-Not-Resuscitate if the heart stops or the patient stops breathing. It does not mean do not treat for other problems. An out of hospital DNR allows a person to refuse cardiopulmonary resuscitation outside the hospital setting. It does not mean you will not be treated for other problems. Health care providers and emergency personnel will not perform CPR but can provide transportation to the hospital if needed without resuscitation. The Out of Hospital DNR form and ID can be obtained through your this home. SPEAKER’S NOTES This is the only type of advance directive that requires your physician’s signature. Because CPR, as previously discussed is so ineffective in the nursing home setting, we strongly urge that every patient have this type of directive.

Step #5: Inform Others of My Choices Keep the original copy of your Advance Directives. Provide signed copies to: your official spokesperson your family members your healthcare providers: physicians, clinics, hospitals, nursing homes, dialysis centers, hospice services, etc. SPEAKER'S NOTES Read the slide. Note that the home will help provide copies of any completed advance directive and a copy will be kept in the medical chart, will travel with the patient to the hospital if that is required, and will be sent to the physician’s office as well.

Key Points to Take Home As long as you are able, you and your physician will make decisions together. Advance Care Planning relieves you and your family of additional emotional distress. Advance Directives are the legal documentation of your beliefs and values. You always have the right to cancel or change your Advance Directives. SPEAKER'S NOTES Read the slide. Be prepared to answer questions, as time allows. Remember, if someone is asking legal questions, refer them to an attorney. If you are working one on one with a patient and/or family, agree upon a follow-up visit.