Heart Talk: Living with Education for Patients, Families and Caregivers Heart Failure
This content has been provided by Qualidigm and its Communities of Care project. More information as well as educational videos about heart failure can be found on our website: www.qualidigm.org or by emailing: HeartTalk@qualidigm.org. Special thanks to the Communities of Care Education Committee and the following for their efforts and valuable input in creating this educational booklet: Dana Alan BA Qualidigm Carol Dietz RN, MBA Qualidigm Shelley Dietz RN, BSN, MBA Hospital of Central Connecticut Anne Elwell RN, MPH Qualidigm Wendy Martinson RN, BSN University of Connecticut Health Center Eileen McAdoo RN, MSN All About You! Home Care Services Kerry McGuire MS, APRN Hartford Hospital Michelle Pandolfi MSW, LNHA Qualidigm Nancy Slocum Genesis Health Care Lauren Williams RN, BSN Connecticare, Inc.
What is Heart Failure? Heart failure is: Weakness of the heart Sometimes heart failure is also called: o Congestive heart failure o Pulmonary edema o Fluid on lungs Symptoms (what you will be feeling) of heart failure are: Hard time breathing Swollen ankles, legs, or belly/abdomen (sometimes doctors call it edema ) Weak and tired
Can Heart Failure Be Treated? YES! Although heart failure is a chronic disease (it will never go away no matter how good you feel) it can be treated so that you can continue to live your life. Heart Failure Can Be Treated with: Medications Procedures Surgery Be sure to talk to your doctor to see what is the right kind of treatment for you.
What YOU can do! Patients, like you have an important part in keeping yourself feeling good and out of the hospital. People with heart failure can live happy lives for many years by following these 6 steps: 1. Take the medications that your doctor gives you 2. Go to your doctor appointments 3. Monitor (watch) your symptoms (how you feel) and weight 4. Adapt your diet (eating) and fluids (drinking) 5. Get exercise as directed 6. Limit alcohol and caffeine and do not use tobacco Each of these steps is further explained in this booklet. Keep reading!
Step 1: Take Your Medications! It is important to take your medications just like the doctor told you. Your medicines may change after each doctor appointment, or when you are in the hospital. It can be confusing, so keeping a list is very important. Be sure to share this list with all of your doctors and bring it to all of your appointments. Patients who take their medicines as the doctor said to live longer, feel better, and spend less time in the hospital.
What medicines do I need to take? Each MORNING after you wake up, follow this schedule: Medicine name (generic and name brand) and amount Why am I taking this medicine? Morning Medicines How much do I take? How do I take this medicine? Doctor who gave it to me:
What medicines do I need to take? Each day at NOON, follow this schedule: Medicine name (generic and name brand) and amount Why am I taking this medicine? Afternoon Medicines How much do I take? How do I take this medicine? Doctor who gave it to me:
What medicines do I need to take? Each EVENING, follow this schedule: Medicine name (generic and name brand) and amount Why am I taking this medicine? Evening Medicines How much do I take? How do I take this medicine? Doctor who gave it to me:
What medicines do I need to take? Each day at BEDTIME, follow this schedule: Medicine name (generic and name brand) and amount Why am I taking this medicine? Bedtime Medicines How much do I take? How do I take this medicine? Doctor who gave it to me:
What other medicines can I take? If I need medicine for a headache If I need medicine to stop smoking If I need medicine for If I need medicine for If I need medicine for If I need medicine for If I need medicine for If I need medicine for Medicine name and amount How much do I take? How do I take this medicine? Remember to tell all of your doctors about all your medicines, vitamins and other medications you may get without a prescription at the drug store.
Step 2: Go to Your Doctor Appointments Do not be afraid to talk to your doctor or other people in the office about any questions or concerns you may have. Always ask someone if you don t understand something, or if you feel something is just not right. Your doctors and nurses are there to help and support you. Tips to follow: Set up a doctor appointment before you leave the hospital or other care facility Set it up on the best day and time for you Make sure you have a ride to your appointments GO TO ALL OF YOUR SCHEDULED APPOINTMENTS Bring a friend or family member Bring all medications or a medication list to all doctor appointments Ask questions! Heart failure is not simple. The doctor needs to see you often to keep you well.
Step 3: Monitor Your Symptoms (How do you feel?) Keep these things in mind: When your body holds extra fluid (water), your weight goes up Weight gain from fluid can start up to two weeks before you feel other symptoms By weighing yourself every day, you can keep track of your weight
Step 3: Weigh Yourself Things you will need to do: Buy a scale if you do not already have one Make sure you can read the numbers easily on the scale Write your weight down EVERY DAY using the charts on the next two pages or on a calendar Bring the weight chart to your doctor appointment Remember to: Weigh yourself every morning at about the same time o After urinating o Before having anything to eat or drink o Wearing the same amount of clothing o Using the same scale Tell your doctor when you gain: o 3 pounds in one day OR o 5 pounds in one week
Are you in the Correct Heart Failure Zone? Use these Zones To Help Manage Your Heart Failure GREEN ZONE All Clear - GOAL YELLOW ZONE Caution - WARNING RED ZONE EMERGENCY You have: No shortness of breath breathing easy No weight gain more than 3 pounds per day No swelling of feet, ankles, legs or stomach/belly No chest pain You have: Weight gain of 3 pounds in 1 day or 5 pounds in one week More shortness of breath breathing harder Harder to breathe lying down the need to sleep in a chair More swelling in your feet, ankles, legs or stomach/belly Feeling more tired New or unusual coughing Dizziness You have: Hard time breathing Struggling to breathe even when resting Chest pain or discomfort Feeling faint What to do: Keep up the good work!! Take your medicine Eat a low salt diet Weigh yourself every day What to do: Call your doctor or nurse: #: Doctor s Name: Nurse s Name: What to do: Call 911 or Get help and go to the emergency room
Daily Weight and Zone Chart Use this chart or a calendar to keep track of your weight and see which zone you are in each day. Share Sunday this with your doctor at your appointments. Monday Tuesday Wednesday Thursday Friday Saturday
Step 4: Adapt Diet and Fluids (What You Eat and Drink) Salt is also called SODIUM and is found in most foods you eat. Why do you need to limit the salt (sodium) in your diet? Salt acts like a sponge and makes your body hold onto water. Eating too much salt can cause you to gain weight, make your legs swell and cause water to go to your lungs, making it harder to breathe. How much salt (sodium) can you have each day? The American Heart Association recommends no more than 2,300 milligrams (mgs) a day and an ideal limit of no more than 1,500 mg per day for most adults. Please check with your doctor to see what amount is right for you. SALT = SODIUM and SODIUM = SALT
Reading a Nutrition Label Sodium = Salt Here is an example of a nutrition label. Always check to see how many servings are in the box or can. If you eat a portion larger than the serving size, you end up eating more salt than is listed on the label. Your goal is to LOWER the amount of salt (sodium) you eat. Sodium (salt) is found in many foods, in addition to the salt you may add to your foods: 1 teaspoon salt = 2,300 mg sodium 1 teaspoon baking soda = 1,259 mg sodium 1 teaspoon baking powder = 488 mg sodium 1 teaspoon MSG = 700 mg sodium
Reading a Nutrition Label Sodium = Salt It is important that you read food labels to find out the sodium content of foods. It may also be helpful to know that the government ruled that some words used on labels must mean what they say: Key words: Sodium Free (or salt free ) Very low sodium Low Sodium Less Sodium Reduced Sodium Light in Sodium Unsalted / Without added salt No salt added Meaning: Very little salt (less than 5 mg per serving) 35 mg sodium or less per serving 140 mg sodium or less per serving 20% sodium reduction from original At least 25% reduction from the original 50% sodium reduction from the original No salt added during process No salt added during process
Foods High in Salt These foods should be avoided or limited: Canned foods/soups Potato chips Frozen dinners Ham and Bacon Deli meats French fries Hot dogs Sea salt Jar tomato/pasta Adobo seasoning sauce Salad dressings Pickles Cheeses Sausages and Kielbasa Soy sauce Tips To Keep You Eating Healthy: If you do eat salt, tell your doctor: o Medications may need to be adjusted o More doctor visits may be needed o You may need to talk with a diet specialist, commonly called a dietitian If you eat out, choose heart healthy foods. A few suggestions are: o Order baked or broiled foods (chicken, fish and steamed vegetables) o Ask for a salad dressing, sauce or gravy on the side
Step 4: Adapt Diet and Fluids (What You Eat and Drink) Drinking Too Many Fluids? Most people with heart failure can drink normal amounts of fluid. Do not restrict your fluids unless you are told to do so by your doctor. By staying away from salt and watching your fluid intake in your diet, you can live longer, feel better, and spend less time in the hospital.
Step 5: Exercising and Keeping Active In general, exercising, having sex and driving are OK. Make sure to talk to your doctor about what kind of exercise is safe or good for you. Tips to follow for exercising and having sex: Follow the treatment plan your doctor gives you Wait at least 1 hour after eating before exercising or having sex Stop and rest for a while if you get tired or have a problem Pace yourself Choose a time when you feel your best
Write down the exercise goals your doctor told you here and follow this schedule: Doctor Ordered Exercise Routine Exercise Goal(s): Day Time Activity Length While exercising I felt: After exercising I feel:
Step 6: Limit Alcohol and Caffeine Alcohol: If you are allowed to drink alcohol, have no more than: 2 drinks a day (for men) 1 drink a day (for women) One drink is: 1 ½ shot glasses of 80 proof or 1 shot glass of 100 proof alcohol 5 oz glass of wine 12 oz bottle of beer Alcohol can make your heart failure worse. It can also affect your medicines. Caffeine: Caffeine is usually OK in moderation (always check with your doctor). If allowed, have no more than: 1 or 2 cups per day
Step 6: Do NOT use Tobacco Tobacco Use: If you smoke (cigarettes or cigars), please STOP! o It is bad for anyone, but especially for those with heart failure o It makes the heart work harder o It can lead to heart attacks Ask your doctor or nurse about help to quit smoking
Healthcare Planning for Your Future Who will speak for you, if you can t speak for yourself? 90% of Americans have heard of a living will 1 71% of Americans have thought about their end-oflife preferences 1 Only 29% of Americans have a living will 1 Without a plan, your healthcare team won t know your wishes, and your family may not know what to do. Healthcare planning for your future, also known as Advance Care Planning, is about conversations and decisions. It is for people of all ages. Advance care planning lets your family and healthcare team know what your choices and wishes are. It allows you to remain in control of your care should you become very sick. Plans for your future healthcare are documented on papers called Advance Directives. 1 www.nhdd.org
ADVANCE DIRECTIVES Advance directives are legal papers that tell others what you want for your medical care when you can t speak for yourself. Advance directives are used only if you can t speak for yourself. An advance directive has two parts: 1. a living will 2. a durable power of attorney for health care Living Will Is a legal paper(s)/document Is used when you can t speak for yourself Tells your doctors what care you want if you are dying or permanently unconscious and cannot make decisions about emergency treatment Is for health care choices only Is created while you are alive and able to speak for yourself Durable Power of Attorney for Health Care Is a legal paper(s)/document Is used when you can t speak for yourself Names someone to make medical decisions for you only when you cannot speak for yourself. The person you name is called a healthcare proxy A proxy can be chosen in addition to or instead of a living will Is created while you are alive and able to speak for yourself
When choosing a DURABLE POWER OF ATTORNEY FOR HEALTHCARE, choose someone you trust to follow your wishes. This person might be a: Family Member Close friend Priest Minister Rabbi Lawyer DOCUMENTING EMERGENCY CARE CHOICES You have choices about how you want to be treated when there is no longer a cure for your condition or when you are dying. You can make those decisions now while you are alive and well. You can document these decisions in your living will. These decisions are about doctors using emergency treatments to keep you breathing and your heart beating: cardiopulmonary resuscitation (CPR) ventilator use (breathing through a tube) artificial nutrition (tube feeding) or artificial hydration (intravenous fluids) The following table helps explain each of the above - what it is, when it is used and why it is used.
CPR (cardiopulmonary resuscitation) Used after your heart stops. Doctors/nurses push hard on your chest again and again. Doctors/nurses blow air through your mouth into your lungs. CPR may re-start your heart, and these actions may also break your ribs or collapse a lung. Doctors/nurses may also use medicines or electric shocks to help re-start your heart. EMERGENCY TREATMENTS Ventilator Use Used when you can t breathe on your own. Machines do the breathing for you. A tube connected to a ventilator machine, is put down your throat and pushes air into your lungs. Medicines keep you sleeping, while the tube is in your throat. After a few days, if you can t breathe without the ventilator machine, doctors may put a tube into your throat through a hole in your neck instead. You can stay awake then, but can t talk without special help. Artificial Nutrition (tube feeding) or Artificial Hydration (intravenous fluids) Used if you can t eat or drink. Tube feeding: A tube placed up your nose and down your throat, is used to feed you. If using for a long time, surgery is needed to put the tube into your stomach, instead. Intravenous fluids: A tube is placed in your vein to give you fluids. The use of tubes for feeding or fluids can be uncomfortable if near death.
DO NOT RESUSCITATE ALLOW NATURAL DEATH Do Not Resuscitate (DNR), also referred to as Allow Natural Death (AND), is another way to tell your doctors and healthcare team what your wishes and choices are for treatment when there is no longer a cure for your condition or when you are dying. DNR and AND promotes comfort and dignity. It means supporting you in your choice to die when nature determines it is your time. It means that no emergency treatments will be used if your heart stops or you stop breathing. Other choices you may have to make are included on the next page:
Hospitalization Your time in the hospital may increase and occur often during the last months of life. Comfort Care Comfort care includes treating symptoms that make you uncomfortable and providing support for example: managing shortness of breath, limiting medical testing, providing spiritual and emotional counseling, and giving medication for pain, anxiety, nausea, or constipation. Comfort care includes Palliative Care Focuses on improving quality of life for both the patient and the family It is appropriate at any age and at any stage in a serious illness Care is provided by the entire healthcare team Can be received in many care settings; including your own home Can be provided along with curative treatment Hospice Care Relieves suffering and also focuses on improving quality of life for both the patient and the family It is appropriate at any age and is provided during the patient s final days, weeks or months Care is provided by the entire healthcare team Can be received in many care settings; including your own home After death, the hospice team continues to offer support to your family
Making decisions, having the conversations and planning for your future (advance care planning) is an important step in letting your healthcare team and family know your wishes. Many choices are available to you and your family. These choices will keep you in control of your life. Planning now rather than later will make difficult decisions easier for you and your family. The above information has been adapted from the National Institute on Aging website http://www.nia.nih.gov/health/publication/advance-care-planning ADVANCE CARE PLANNING RESOURCES The following websites have further information and resources for you and your family when discussing your advance care plans: National Health Care Decisions Day: A website about the importance of advance care planning www.nhdd.org (USA) www.advancecareplanning.ca (CANADA) Medical/Physician Orders for Life Sustaining Treatment: Approaches to end-of-life planning that focus on patients wishes for care they receive http://www.polst.org/ (National POLST) https://www.compassionandsupport.org/index.php/for_patients_families/molst (MOLST) Five Wishes Document: A legal living will form in 42 states and available in 26 languages www.agingwithdignity.org/5wishes National Institute on Aging: ederal website dedicated to aging research and F resources http://www.nia.nih.gov/health/publication/advance-care-planning
Make These Steps A Permanent Part Of Your Life! Following these 6 steps and anything else the doctor and nurse tell you to do will pay off for you! You can stay active and enjoy a quality life by following their advice. We know that it can be hard. If you are having trouble following the advice of the doctor, please do not change anything instead, talk to your doctor or nurse for help! Write down any problems you are having or questions that you would like to ask your doctor or nurse. Remember to bring them with you to your doctor appointments to get some answers. Things that are hard for me and questions I have: 1) 2) 3) 4) 5)
Remember These 6 Steps To STAYING HEALTHY! 1. Take the medications that your doctor gave you. 2. Go to your doctor appointments. 3. Monitor (watch) your symptoms (how you feel) and weight. 4. Adapt your diet (eating) and fluids (drinking). 5. Get exercise as directed. 6. Limit alcohol and caffeine and do not use tobacco. Patients who follow these steps live longer, feel better, and spend less time in the hospital.
Heart Talk Video A FREE video on how to live with heart failure is available at. Heart Talk: How to Live with Heart Failure is a video created for patients living with heart failure, their families and caregivers. A doctor explains how you can feel and live well with heart failure, including tips on how to stay healthy and how to stay out of the hospital. To watch the video, go to the website: and scroll down to Series 3. The video will play like a movie on your computer. This booklet and the video have the same information so you can follow along as you watch.
Many FREE resources and videos on how to live with Chronic Obstructive Pulmonary Disease (COPD) are available at www.lungtalk.org. Lung Talk: How to Live with COPD is a video series and resource website created for patients living with COPD, their families and caregivers. Medical professionals and patients explain how you can feel and live well with COPD, including tips on how to stay healthy and how to stay out of the hospital. To watch the videos and explore the resources, go to the website: www.lungtalk.org.
This material was prepared in collaboration with Qualidigm, the Medicare Quality Improvement Organization for Connecticut, under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy. Pub #CT-800100-2011052. The views and opinions expressed here do not reflect the policy or position of the Centers for Medicare and Medicaid Services, nor of Qualidigm. Examples and information provided are for educational purposes only and should not be construed as medical advice. Any person with questions or concerns relating to any medical condition or treatment should consult with a qualified health care professional.
(860) 632-2008 Fax: (860) 632-5865 www.qualidigm.org Questions? Email us at HeartTalk@qualidigm.org