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Advance care, end of life planning
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Talk with your doctor about how your present health conditions might influence your health in the future.
Advance care planning is not just about old age. At any age, a medical crisis could leave someone too ill to make his or her own healthcare decisions.

More than one of four older Americans face questions about medical treatment near the end of life but are not capable of making those decisions. This tip sheet will discuss some questions you can think about now and describe ways to share your wishes with others.

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive.

An advance directive is a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury – no matter how old you are. It helps others know what type of medical care you want. It also allows you to express your values and desires related to end-of-life care. You might think of an advance directive as a living document – that you can adjust as your situation changes because of new information or a change in your health.

Sometimes when doctors believe a cure is no longer possible and you are dying, decisions must be made about the use of emergency treatments to keep you alive. Doctors can use several artificial or mechanical ways to try to do this. Decisions that might come up at this time relate to:

• CPR (cardiopulmonary resuscitation)

• ventilator use

• artificial nutrition (tube feeding) or artificial hydration (intravenous fluids)

• comfort care

CPR. CPR might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. The heart of a young, otherwise healthy person might resume beating normally after CPR. An otherwise healthy older person, whose heart is beating erratically or not beating at all, might also be helped by CPR. But for an older person who is ill, can’t be successfully treated, and is already close to death, CPR is less likely to work.

Ventilator use. Ventilators are machines that help you breathe. A tube connected to the ventilator is put through the throat into the trachea (windpipe) so the machine can force air into the lungs. Putting the tube down the throat is called intubation.

Because the tube is uncomfortable, medicines are used to keep you sedated while on a ventilator. If you can’t breathe on your own after a few days, a doctor may perform a tracheotomy or “trach.” During this bedside surgery, the tube is inserted directly into the trachea through a hole in the neck.

For long-term help with breathing, a trach is more comfortable, and sedation is not needed. People using such a breathing tube aren’t able to speak without special help because exhaled air goes out of the trach rather than past their vocal cords.

Artificial nutrition or artificial hydration. A feeding tube and/or intravenous liquids are sometimes used to provide nutrition when a person is not able to eat or drink. These measures can be helpful if you are recovering from an illness. However, if you are near death, these could actually make you more uncomfortable.

For example, IV liquids, which are given through a plastic tube put into a vein, can increase the burden on failing kidneys. Or if the body is shutting down near death, it is not able to digest food properly, even when provided through a feeding tube.

At first, the feeding tube is threaded through the nose down to the stomach. In time, if tube feeding is still needed, the tube is surgically inserted into the stomach.

Comfort care. Comfort care is anything that can be done to soothe you and relieve suffering while staying in line with your wishes. Comfort care includes managing shortness of breath, offering ice chips for dry mouth, limiting medical testing, providing spiritual and emotional counseling, and giving medication for pain, anxiety, nausea, or constipation. Often this is done through hospice, which may be offered in the home, in a hospice facility, in a skilled nursing facility, or in a hospital. With hospice, a team of healthcare providers works together to provide the best possible quality of life in a patient’s final days, weeks, or months. After death, the hospice team continues to offer support to the family.

What is hospice and palliative care?

Hospice care is intended to provide comfort to you and your family during a life-threatening illness, rather than provide treatments to cure the illness. Palliative care is similar to comfort care in hospice, but it is offered along with any medical treatments you might be receiving for a life-threatening illness, such as chemotherapy for cancer or dialysis for kidney failure.

The main goal of both hospice and palliative care is to keep you comfortable. In addition, you can always choose to move from hospice to palliative care if you want to pursue treatments to cure your illness.

Start by thinking about what kind of treatment you do or do not want in a medical emergency. It might help to talk with your doctor about how your present health conditions might influence your health in the future.

In considering treatment decisions, your personal values are key. Is your main desire to have the most days of life, or to have the most life in your days? What if an illness leaves you paralyzed or in a permanent coma and you need to be on a ventilator? Would you want that?

What makes life meaningful to you? You might want doctors to try CPR if your heart stops or to try using a ventilator for a short time if you’ve had trouble breathing, if that means that, in the future, you could be well enough to spend time with your family.

Even if the emergency leaves you simply able to spend your days listening to books on tape or gazing out the window watching the birds and squirrels compete for seeds in the bird feeder, you might be content with that.

But in some cases, other scenarios could arise. Here are a few. What would you decide?

If a stroke leaves you paralyzed and then your heart stops, would you want CPR? What if you were also mentally impaired by the stroke? Does your decision change?

What if you develop dementia, don’t recognize family and friends, and, in time, cannot feed yourself? Would you want a feeding tube used to give you nutrition?

What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics and a ventilator used?

For some people, staying alive as long as medically possible is the most important thing. An advance directive can help make sure that happens.

Your decisions about how to handle any of these situations could be different at age 40 than at age 85. Or they could be different if you have an incurable condition as opposed to being generally healthy. An advance directive allows you to provide instructions for these types of situations and then to change the instructions as you get older or if your viewpoint changes.

Making your wishes known

There are two elements in an advance directive – a living will and a durable power of attorney for health care. There are also other documents that can supplement your advance directive or stand alone. You can choose which documents to create, depending on how you want decisions to be made. These documents include:

• living will

• durable power of attorney for health care

• other documents discussing DNR (do not resuscitate) orders, organ and tissue donation, dialysis, and blood transfusions

Living will. A living will is a written document that helps you tell doctors how you want to be treated if you are dying or permanently unconscious and cannot make decisions about emergency treatment.

Durable power of attorney for health care. A durable power of attorney for health care is a legal document naming a healthcare proxy, someone to make medical decisions for you at times when you might not be able to do so. Your proxy, also known as a surrogate or agent, should be familiar with your values and wishes. This means that he or she will be able to decide as you would when treatment decisions need to be made.

Other advance care planning documents. You also might want to prepare separate documents to express your wishes about a single medical issue or something not already covered in your advance directive. A living will usually covers only the specific life-sustaining treatments discussed earlier. You might want to give your healthcare proxy specific instructions about other issues, such as blood transfusion or kidney dialysis. This is especially important if your doctor suggests that, given your health condition, such treatments might be needed in the future.

Two medical issues that might arise at the end of life are DNR orders and organ and tissue donation.

A DNR order tells medical staff in a hospital or nursing facility that you do not want them to try to return your heart to a normal rhythm if it stops or is beating unevenly. Even though a living will might say CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. And posting a DNR next to your bed might avoid confusion in an emergency situation. Without a DNR order, medical staff will make every effort to restore the normal rhythm of your heart. A similar document that is less familiar is called a DNI (Do Not Intubate) order. A DNI tells medical staff in a hospital or nursing facility that you do not want to be put on a breathing machine.

Organ and tissue donation allows organs or body parts from a generally healthy person who has died to be transplanted into people who need them. Commonly, the heart, lungs, pancreas, kidneys, corneas, liver, and skin are donated. There is no age limit for organ and tissue donation. You can carry a donation card in your wallet. Some states allow you to add this decision to your driver’s license.

Selecting Your Healthcare Proxy

If you decide to choose a proxy, think about people you know who share your views and values about life and medical decisions. Your proxy might be a family member, a friend, your lawyer, or someone with whom you worship. It’s a good idea to also name an alternate proxy. It is especially important to have a detailed living will if you choose not to name a proxy.

You can decide how much authority your proxy has over your medical care – whether he or she is entitled to make a wide range of decisions or only a few specific ones. Try not to include guidelines that make it impossible for the proxy to fulfill his or her duties. For example, it’s probably not unusual for someone to say in conversation, “I don’t want to go to a nursing home,” but think carefully about whether you want a restriction like that in your advance directive. Sometimes, for financial or medical reasons, that may be the best choice for you.

Check with those you choose as your proxy and alternate before you name them officially. Make sure they are comfortable with this responsibility.

Making it official

The next step is to fill out the legal forms detailing your wishes. A lawyer can help but is not required. If you decide to use a lawyer, don’t depend on him or her to help you understand different medical treatments.

Many states have their own advance directive forms. Your local Area Agency on Aging can help you locate the right forms. Call the Eldercare Locator toll-free at 1-800-677-1116.

Some states want your advance directive to be witnessed; some want your signature notarized.

Some people spend a lot of time in more than one state – for example, visiting children and grandchildren. If that’s your situation, consider preparing an advance directive using forms for each state – and keep a copy in each place, too.

Future directions

A number of states are developing or starting to use an advance care planning form known as POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment). These forms serve in addition to your advance directive. They make it possible for you to provide more detailed guidance about your medical care preferences. Once signed by your doctor, this form has the force of any other medical order.

After your advance directive

There are key people who should be told that you have an advance directive. Give copies to your healthcare proxy and alternate proxy. Give your doctor a copy for your medical records. Tell key family members and friends where you keep a copy. If you have to go to the hospital, give staff there a copy to include in your records. Because you might change your advance directive in the future, it’s a good idea to keep track of who receives a copy.

Review your advance care planning decisions from time to time. You might want to revise your preferences for care if your situation or your health changes.

Still not sure?

What happens if you have no advance directive or have made no plans and you become unable to speak for yourself? In such cases, the state where you live will assign someone to make medical decisions on your behalf. This will probably be your spouse, your parents if they are available, or your children if they are adults.

This article was published June 21 in Tampa Bay Newspapers' special edition, Generations available in its entirety at e-edition.tbnweekly.com. Free sign up required.
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