Advance Care Planning

Shot of a mature man and his elderly father having coffee and a chat at home

You may never face a medical situation where you are unable to make your wishes known.  But, just in case, such a medical emergency occurs, advance care planning helps you get the quality of emergency medical care you want. 

What Is advance care planning? 

Advance care planning gives you control over important health care decisions by:

  • Learning about the types of decisions that might need to be made
  • Considering those decisions in advance
  • Deciding what you would want to happen
  • Letting others know about your preferences

Your advanced care planning preferences only go into effect if you are unable to express yourself. 

“It’s really important to talk to your family. It helps doctors honor your wishes, and it unburdens your loved ones from having to imagine what you want.”

Mark Lewis, MD
Mark Lewis, MD,
Intermountain Health

Considering your health care decisions in advance

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 neuroendocrine cancer may influence your health in the future. Your doctor can help you think through your choices before you put them in writing. Medicare or private health insurance may cover advance care planning discussions with your doctor. Let your personal beliefs and values drive your decision making when considering important questions. 

  • Is your main desire to have the most days of life? Or, would your focus be on the quality of life?
  • If you are in a permanent coma, would you want to be on a ventilator? If you were on a ventilator and develop pneumonia, would you want antibiotics?
  • What makes life meaningful to you? If your heart stops or you have trouble breathing, would you want to undergo life-saving measures if it meant that, in the future, you could be well enough to spend time with your family? 
  • What if you are in pain at the end of life? Do you want medication to treat the pain, even if it will make you more drowsy and lethargic?

“If we think about the things that worry us, we can help to avoid those things and make sure we get the care and quality of life that really matters to us.”

Pantilat-white-coat-photo-cropped-1180x664
Steve Pantilat, MD,
University of California,
San Francisco

For some people, staying alive as long as medically possible, or long enough to see an important event like a grandchild’s wedding, is the most important thing. Others have a clear idea about when they would no longer want to prolong their life. Your decisions about how to handle any of these situations could be different at age 40 than at age 85. Advance care planning allows you to provide instructions for these types of situations and change them if your viewpoint changes.

Having crucial conversations with your loved ones

Your health care decisions are up to you. And the best way to take control of these decisions is by putting them in writing. Start by talking with your loved ones.  These are not easy conversations to have, but they are essential in making sure your wishes are understood. If you aren’t sure how to start, check out these guides on how to get started.

  • The Conversation Project offers tools, guidance, and resources to help people of all ages talk with their loved ones about their end-of-life wishes and preferences, including a “Conversation Starter Kit” and links to legal and medical documents to record these preferences.
  • Caring Conversations® offers a workbook from the Center for Practical Bioethics as a guide for family and friends through the process of advance care planning with downloadable forms.
  • Engage with Grace is a nonprofit organization focused on improving end-of-life care through better communication. The organization encourages families to talk about their wishes at family gatherings, using five questions that can be downloaded from its website.

Always remember:
An advance directive is only used if you are in danger of dying and need certain emergency or special measures to keep you alive, and you are not able to make those decisions on your own.

The types of health care decisions to be made 

During advanced care planning, you will want to consider what kind of emergency treatments you would want to have to keep you alive, including: 

Cardiopulmonary resuscitation might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. It involves repeatedly pushing on the chest with force while putting air into the lungs. Electric shocks, known as defibrillation, and medicines might also be used as part of the process.

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 often used to keep you sedated while on a ventilator. If you are expected to remain on a ventilator for a long time, a doctor may perform a tracheotomy or “trach” (rhymes with “make”). 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 are not able to speak without special help because exhaled air does not go past their vocal cords.

If you are not able to eat, you may be fed through a feeding tube that is threaded through the nose down to your stomach. If tube feeding is still needed for an extended period, a feeding tube may be surgically inserted directly into your stomach. Hand feeding (sometimes called assisted oral feeding) is an alternative to tube feeding. If you are not able to drink, you may be provided with IV fluids. These are delivered through a thin plastic tube inserted into a vein.

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, limiting medical testing, providing spiritual and emotional counseling, and giving medication for pain, anxiety, nausea, or constipation.

Making your wishes known

You can let others know about your wishes by creating an advance directive. There are two main elements of an advance directive—a living will and a durable power of attorney for health care.

Living Will

A living will is a written document that tells doctors how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about emergency treatment. In a living will, you can say which of the procedures described above you would want, which ones you wouldn’t want, and under which conditions each of your choices applies. A living will usually covers only the specific life-sustaining treatments listed above.

Some people are reluctant to put specific health decisions in writing. For them, naming a health care proxy might be a good approach. If you decide to choose a proxy, think about someone you know who shares your views and values about life and medical decisions. Your proxy might be a family member, a friend, your lawyer, or someone in your social or spiritual community. It’s a good idea to also name an alternate proxy. Of course, check with those you want to choose before you officially name them to make sure they are comfortable with this responsibility. 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. 

It is especially important to have a detailed living will if you choose not to name a proxy. A proxy can be chosen in addition to or instead of a living will by creating a durable power of attorney for health care.

Durable power of attorney for health care.

A durable power of attorney for health care is a legal document naming a health care proxy, someone to make medical decisions for you at times when you are unable to do so. Your proxy (also known as a representative, 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. Having a health care proxy helps you plan for situations that cannot be foreseen, like a serious auto accident.

Other advance care planning documents

You might also want to prepare documents to express your wishes about a single medical issue or something not already covered in your advance directive.  Medical issues that might arise at the end of life include

A DNR (do not resuscitate) 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 using CPR or other life-support measures. Sometimes this document is referred to as a DNAR (do not attempt resuscitation) or an AND (allow natural death) order. Even though a living will 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. 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 your breathing and the normal rhythm of your heart.

POLST and MOLST forms provide guidance about your medical care preferences in the form of a doctor’s orders. Typically, you create a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) when you are near the end of life or critically ill and know the specific decisions that might need to be made on your behalf. These forms serve as a medical order in addition to your advance directive. They make it possible for you to provide guidance that health care professionals can act on immediately in an emergency.

A number of states use POLST and MOLST forms, which are filled out by your doctor or sometimes by a nurse practitioner or physician’s assistant. The doctor fills out a POLST or MOLST after discussing your wishes with you and your family. Once signed by your doctor, this form has the same authority as any other medical order.

Putting it in writing

Once you know your preferences, the next step is to fill out the legal forms detailing your wishes. Many states have their own advance directive forms. Some states require your advance directive to be witnessed; a few require your signature to be notarized. A notary is a person licensed by the state to witness signatures. You might find a notary at your bank, post office, or local library, or call your insurance agent. Some notaries charge a fee.

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 keeping a copy in each place, too.

Resources for finding the
advance directives for your state

  • Your health care provider
  • Your attorney
  • Your state health department
  • Your local Area Agency on Aging can help you locate the right forms. You can find your area agency phone number by calling the Eldercare Locator toll-free at 1-800-677-1116 or going online at www.eldercare.gov.

After you set up an advance directive

Give copies of your advance directive to your health care proxy and alternate proxy. Give your doctor a copy for your medical records. Tell close family members and friends where you keep a copy. If you are admitted to the hospital, give the staff there a copy to include in your records. Since 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 if your health changes. Or, you might want to make adjustments if you get married, separated, or divorced; if your spouse dies; or if something happens to your proxy or alternate. If your preferences change, you will want to make sure your doctor, proxy, and family know about them.

What happens if you don’t set up an advance directive? 

What happens if you have no advance directive or have made no plans, and you become unable to advocate 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). If you have no family members, the state will choose someone to represent your best interests.

Netrf.org terms and conditions: This information is not intended as and shall not be relied upon as medical advice. The Neuroendocrine Tumor Research Foundation encourages all users to discuss any information found here with their oncologist, physician, and/or appropriate qualified health professional.

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