Choosing your Health Care Surrogate (HCS)

Who would be the best Health Care Surrogate (HCS)?
A HCS is the person you choose to speak for you. They make decisions about your treatments based on your desires, values and beliefs – not theirs. Consider naming someone: Who is willing. Who understands your goals and values. Who will follow your preferences, even if they are different from their own. Who can make decisions in sometimes difficult or emotional situations.

Who can be a HCS? How do I name a HCS?
A HCS needs to be an adult (age 18 years or older). Your HCS can be any person of your choice, including an unmarried partner. They do not need to be a family member.

Do I need a witness, notary, or lawyer?
Fill out a HCS form and have it signed by two witnesses – only one witness can be a spouse or blood relative. Your HCS cannot be your witness. You do not need a lawyer to complete a HCS form. In the state of Florida, it does not need to be notarized. As long as you complete a HCS form in another state under their law, it is valid in Florida.

What if I don’t choose a HCS?
If you do not chose a HCS, the State of Florida has laws in place to determine who will make your medical decisions. This person is called your health care proxy. Florida law names people in this order to make decisions for you:

• legal guardian
• legally married spouse (even if you are separated)
• majority of adult children
• a parent
• majority of adult siblings
• an adult relative that shows care and concern
• a close friend who shows care and concern
• a licensed clinical social worker
• Florida law does not use “next of kin”

Can a HCS be changed?
Yes. You can change it at any time. In fact, it should be reviewed and updated regularly. You should review it each decade, with a change in diagnosis (illness), a decline, a divorce or the death of a loved one.

Filling out Your Living Will

It can be helpful to know about your medical history to make the best plan. Knowing the risks and benefits of any medical decision you make is important.

Can I fill out a Living Will myself?
Yes, you can fill out a living will by yourself. You can also fill it out with someone you trust, your health care surrogate, or a certified facilitator.

Can a living will be changed?
Yes. You can change it at any time. In fact, it should be reviewed and updated regularly. You should review it each decade, with a change in diagnosis (illness), a decline, a divorce or the death of a loved one.

CPR

What is CPR (cardiopulmonary resuscitation)?

• When your heart stops, this is called cardiac arrest. Cardiac arrest is a normal part of the dying process. It can be expected or unexpected.
• During a cardiac arrest, blood stops flowing to your brain, heart, liver and kidneys. CPR tries to act like your heart and lungs to pump blood and oxygen. CPR may include chest compressions, electric shocks, artificial breathing and/or specialized medicines.
• During chest compressions, someone forcefully pushes on your chest around 100 times per minute. Electric shocks or defibrillations may be needed once or many times. Artificial breathing is given by mouth-to-mouth, a specialized bag or a breathing tube that can be hooked to a machine.

Am I awake?

• No. In a cardiac arrest you lose consciousness. You are not awake.

What happens after CPR? What are the risks?

• If you survive CPR, you will be taken to the Intensive Care Unit and put on life support. It often takes several days to know how successful CPR was. During this time, some people remain unconscious. Sometimes brain damage can occur. Sometimes medications that keep you sleepy are used to control pain or discomfort from the breathing tube. Sometimes there is damage to the liver and kidneys, which requires other artificial treatments.
• There are risks from the cardiac arrest and there are risks from CPR itself. The force needed during chest compressions can cause your ribs and breastbone (sternum) to break and your lungs to collapse. There can be deep bruising and sometimes burns from the defibrillator pads.
• During the cardiac arrest, if you do not get enough blood to the brain, heart, liver and kidneys, you may face additional problems. You may recover or you may be dependent on a breathing machine, have brain damage or need others to care for you. You may or may not be able to live at home again.

Does CPR work? What is the benefit?

• CPR does save lives. It is most useful in young and healthy persons who have a sudden event such as trauma, drowning or poisoning. It is most successful when started right after the heart stops. Sadly, even in these cases, CPR does not always work.
• Several studies estimate around 10% of adults survive an out-of-hospital cardiac arrest. This can increase two to three times if CPR is started immediately and there are few or no chronic health problems. If you have a cardiac arrest in the hospital, several studies estimate the chances of survival are less than 20% and the chances of death are greater than 80%.

I have specific questions about my health conditions that may change what I think is best.

• Health problems like heart disease, COPD, liver disease, kidney disease or cancer, functional limitations (how well you are able to move around and care for yourself), and age can all decrease the success of CPR. Some conditions can lower the chances of living after CPR to less than 1-2%. No matter your choice, it is important to remember that CPR will not improve your current health problems.

Is CPR right for me?

• You will make the right decision for yourself as long as it is based on good information and your goals and values. CPR may not be the best choice for someone with chronic illness who sees independence and comfort as most important. It may be the best choice for someone who sees having a long life as most important and who accepts the possibility of brain damage or loss of function.

How do I make these difficult decisions?

• It is important to consider what matters most to you. Things to consider: What makes a good day? Who would you be with? What would you do? What does quality of life mean to you?
• Consider how you make other important decisions: With family? With friends? With spiritual support?
• Most of us want to live a long life in good health. Sometimes, illness or injury force people to make difficult decisions. This can be especially true when your goals of care do not align with your illness or injury. Sometimes, what we wish for must change, but knowing your goals and having the support of your loved ones and your providers can help prepare for the unexpected.

Is a Living Will the same as a Do Not Resuscitate (DNR) or Do Not Attempt Resuscitation (DNAR) order?

• No. The Living Will is a guideline. It is not a doctor’s order. It is legally recognized but not legally binding. It serves as a guideline for your family and your providers for a time when you may not be able to make health care decisions for yourself.
• An AND (Allow Natural Death) order, a DNR (Do Not Resuscitate) order, and a Do Not Attempt Resuscitation (DNAR) order all mean the same thing. If you feel confident in your decision for a natural death in its time, you should discuss a Florida DNR order with your provider. This is a medical order that directs Emergency Medical Technicians and other First Responders to respect the care you want and do not want at end of life.

Dialysis

What is Dialysis?

• Your kidneys have many jobs. They remove toxins and waste from the body. They help control your blood pressure, your blood counts and even vitamin levels. Kidneys can be injured suddenly from trauma or a loss of blood flow, which can happen during a cardiac arrest. They can also be injured over time from diseases like high blood pressure and diabetes. Dialysis helps your body remove waste and fluid when your kidneys are damaged.
• Dialysis does not take the place of your kidneys. You will need the specialized care of a Nephrologist (kidney doctor) who understands how to treat all parts your kidney disease.

How does it work?

• There are two types of dialysis. Hemodialysis (HD) and Peritoneal Dialysis (PD). There are benefits and risks of hemodialysis and peritoneal dialysis.
• Hemodialysis uses a machine to filter your blood. A fistula or a dialysis catheter (a large IV line) is needed. A trained provider is also needed to manage and monitor dialysis. Hemodialysis is usually done three days a week for three to four hours at a time in a specialized community or hospital clinic.
• Peritoneal dialysis can be done at home and uses the peritoneum (a membrane or clear cover that lines the walls of the abdomen and covers most of the organs) and a dialysate (a cleansing fluid you inject into the abdomen then drain) to help remove waste. Peritoneal dialysis can be done continuously or at night.
• Dialysis can prolong life. It also carries risks including but not limited to infection, nausea, itching and heart problems as well as depression and dementia. A physician will determine if and when hemodialysis or peritoneal dialysis are options for you.

Is it permanent?

• In some cases of sudden injury, dialysis can give the kidneys time to rest and recover. In these cases dialysis is not permanent but can have some lasting effects.
• In cases of chronic illness (having a disease over a longer period of time), once dialysis is needed it is usually permanent. The kidneys do not recover. A kidney transplant can be an option for some individuals.

If I have end-stage renal disease (ESRD) and need HD long term, can it be stopped?

• ESRD is permanent kidney failure. Dialysis can be stopped after careful consideration and a discussion with your nephrologist. Without dialysis, the body cannot survive. Dialysis, like most treatments for chronic illness should be based on your health, your quality of life, and your goals of care.
• If you need dialysis, it is helpful to think about when you would or would not want to begin or continue treatment. Some things to think about include: what care you would you want if your quality of life worsened and you could no longer care for yourself or recognize your family. Setting these boundaries and letting other people know, can help guide you through times of difficult decision-making.

Tube Feeding

What is tube feeding?

• Some illnesses make it difficult or even unsafe to eat. This happens when food, fluids or saliva go down the wind pipe or trachea instead of the food pipe or esophagus. This can make the lung irritated or even cause a lung infection like pneumonia. This is called aspiration. Some illnesses like dementia cause anorexia (when we eat less than our body needs). Aspiration and anorexia are natural side effects of some illnesses.
• Tube feeding uses a tube put through the nose into the stomach for days or weeks in the hospital or surgically put through the skin and into the stomach for long-term feeding. Can I eat with a tube?
• It depends on your illness. If you are able to, you would work with a therapist to help you try to eat on your own.

Can a feeding tube come out?

• Taking out a feeding tube depends on your illness. If the illness gets better, the tube can usually come out after six to eight weeks. If the illness does not get better, the feeding tube often stays forever. However, you or your HCS can chose to stop or remove your feeding tube if your illness gets worse or your goals change.

What are the benefits of tube feeding?

• Tube feeding gives your body nutrients and fluids. It is also a way to get many medications. If your provider thinks your illness will get better (such as getting medicines for a cancer), the tube feeds may help with your nutrition, strength and recovery. If you get a feeding tube for an illness that will not get better and cannot be cured, research shows tube feeding does not make you live better or longer.

Are there risks of tube feeding?

• Most people do okay but there are risks of placing the tube into your body, like infection and pain at the tube site. There have been rare cases of serious problems. You may have diarrhea or bloating which often gets better. You may feel nauseous or get short of breath with your daily feeding(s). You may get infections around the tube and the tube may fall out. Sometimes people are put in arm or hand restraints to stop them from pulling out the tube. The risk of aspiration is lower but it is not gone.
• At the end of life, tube feeding can have additional risks. As the body shuts down, it does not need extra food or fluid. If tube feeding continues, it can cause nausea, bloating, swelling (usually in the arms and legs) and even skin weeping. Keeping the dialogue open between you, your loved ones and your providers is an important way to address these risks with a plan of compassion and action.

What are my other choices aside from tube feeding?

• Some illnesses get better and the feeding tube may come out. Many illnesses get worse over time. We do our best to slow the progression but most times we cannot cure the disease. Some examples of this are COPD, heart failure, kidney failure, liver failure, advanced cancer, strokes and dementia. Tube feeding does not make an illness better. It is often a sign the illness is getting worse.
• When we face this decision, it helps to know your goals for health care. If the goal is living longer, tube feeding may give that chance. If the goal is comfort and quality of life, tube feeding may not be the right choice for you.
• Comfort or pleasure feeding is an alternative to tube feeding. It can mean eating what and when you want while accepting there may be risks. This decision can feel overwhelming. Knowing your values and goals can help you chose what is best for you.