couple reviewing advance care planning documents

Advance Care Planning: The Complete Guide 2022

At any moment, an accident or medical crisis could make you unconscious and unable to make health care decisions. Advance care planning is documenting your health care preferences, for example in an advance directive or living will. This makes it clear what your preferences are for life-sustaining treatments in the event of an emergency.

Most people don’t think much about death or end-of-life care until they are sick with a severe illness or serious injury. Thinking about the common life-sustaining treatments and your perspective on your medical preferences is a good step to starting advance care planning.

 

What is Advance Care Planning?

Advance care planning is thinking ahead and deciding what life-sustaining care and medical treatments you would want if you cannot speak or make decisions.

Advance care planning is putting your wishes in writing so that health care professionals and your family know how to proceed if something happens to you.

 

Why is Advance Care Planning Important?

Filling out advance planning forms (e.g., a living will) documents your end-of-life plan and the type of care you do and do not want.

This gives you control over your health care and preserves your autonomy. Advance planning forms also give providers your health care preferences and whether you would want life-sustaining treatments if there seemed little likelihood of your recovery.

 

 

 

black family around beautiful table ready to eat

How Can Advance Care Planning Help My Family?

Advance care planning empowers the family because it is clear what your wishes are, reducing the risk of conflict.

It may also reduce the burden on your loved ones in the future because they will not have the stress of making major decisions about your health care and wondering if they made the right decisions on your behalf.

Since your wishes are written, it reduces any potential family conflict, as opinions may differ from what care family may think you would want.

 

Make Your Wishes Clear

Although family members may want to make the best decision for you, people have different views and may not know exactly what care you would like.

Here are some examples of how loved ones may mean well but have different opinions on the end of life decisions.

  • If you had advanced dementia and were losing weight because you did not feel hungry and your body was rejecting food as it prepares for death, would you want a feeding tube to give you artificial nutrition and fluids?
    • One family member may advocate for the feeding tube because they can’t bear the thought of you starving.
    • Another loved one may not want you to have the feeding tube. The doctor said you were not in pain, and they don’t want you to suffer by inserting invasive tubes and prolonging the dying process.
  • If you were in an accident and could not speak, breathe, or eat, would you prefer to be placed on a ventilator (a breathing machine) and a feeding tube (to make sure you get food and fluids) to stay alive?
    • One family member may think you would not want to stay alive on the machines because you can’t communicate or recognize anyone.
    • Another loved one may think you would want to stay alive using the machines for as long as possible, even if you likely will have brain damage if you woke up.

 

 

 

 

 

elderly woman advance care planning with life-sustaining treatments of oxygen

What is Life-Sustaining Treatment

Life-sustaining treatments are those treatments that are used to prolong life without reversing the underlying medical condition.

Some life-sustaining treatments are renal dialysis, antibiotics, mechanical ventilation (breathing machine), and artificial nutrition and hydration.

Although medical technology can save your life, some treatments can be intense and harsh, especially for someone who is already in poor health.

Dilemmas arise when these treatments prolong life but do not improve conditions and may be considered invasive and cause pain and suffering.

 

 

What are 5 Common Advance Care Planning Decisions?

 Health care professionals use life support measures when part of your body cannot do what it is supposed to do.

 

 

 

cpr-training-outdoors-reanimation-procedure-on-cpr

Some frequent end of life decisions include:

 

1. Cardiopulmonary Resuscitation (CPR)

Cardiopulmonary resuscitation, also called CPR, can be performed if your heart or breathing stops. CPR usually involves someone

  • pushing on the chest, with force, numerous times
  • Blowing or inserting air into the lungs over and over.
  • Using defibrillation, which are electrical shocks, and drugs, to start the heart.
  • CPR is most successful when your mostly healthy and it is started quickly. But if you are frail and sick, it may not work, and some can be injured from the chest compressions.

 

 

 

feeding tubes with nutritional formula

2. Artificial Nutrition and Hydration (Feeding Tubes)

Do you know whether you would want to have nutrition through a feeding tube or hydration through an IV?

A feeding tube could be used to provide nutrients if you cannot eat or drink.

  • Feeding tubes may be used in some long-term illnesses or temporarily while you get better.
  • If someone is at the end of life, feeding tubes may not be as helpful if they are not curing or healing a condition.
  • Sometimes feeding tubes may cause problems, and some feel using them can be invasive at the end of life.

 

 

 

senior man on bed intubated to breath with doctor

 

3. Mechanical Ventilation ( Intubation)

Mechanical ventilation is also called intubation. This is when they put a tube down your throat and hook you up to a breathing machine because you cannot breathe on your own.

A ventilator or breathing machine pushes air into your lungs so that you can breathe.

  • A ventilator may be used short or long term, depending on the injury or condition.
  • When someone is at the end of life, a ventilator likely will only provide more time and draw out dying, not be a cure.

 

 

 

daughter holding fathers hand end of life quality comfort care

4. Comfort Care and Quality of Life

Comfort care is managing symptoms like pain, shortness of breath, and anxiety.

The focus of comfort care is to minimize suffering and provide emotional and spiritual support.

Would you want to receive medications, say for pain or anxiety, even if your dose needs to be increased, which may cause lethargy and severe drowsiness?

 

 

 

female holding a red heart in hands white background signifies organ donation

5. Organ and Tissue Donation

You may want to let your wishes be known about organ and tissue donation.

Many states provide the opportunity for you to add this information to your driver’s license.

Some people add this information with their other advance care planning documents.

 

 

 

 

 

doctor standing holding advance care planning documents

Things to Consider with Advance Care Planning

A good starting point is thinking about what type of care you would want in an emergency.

  • If you were in a car accident or had a stroke, what kind of support measures would you like?
  • Would your primary focus be to live the longest, or do you prefer to consider the quality of life? If you were in a permanent coma and required a ventilator to live, would you want that?
  • If your heart stopped, would you want CPR? Would you change your mind if your heart stopped when you were permanently unconscious?

These are some difficult things to think about.

It is helpful to consider what makes your life meaningful.

What if life-saving measures could keep you alive, but you would not be able to recognize family or friends?

Talk with Your Doctor

When thinking about advance care planning, you can talk to your health care provider for insight on your medical condition, disease progression, and common future decisions.

Health professionals can discuss common end-of-life issues with you and provide the pros and cons of each decision.  

Your health care professional can also help you fill out the forms if you prefer.

 

african-american-receptionist-passing-document-doctors

 

 

Advance Care Planning Documents

The focus of advance care planning is to think about what medical care you would want and then write it down into a legal document.

You can use several documents in advance care planning.

We describe some in detail below.

 

 

What are Advance Directives?

Advance directives, sometimes called advance care plans, are legal documents that allow you to identify and communicate your health care decisions. These documents come into effect only if you cannot express yourself what type of medical care you want. For example,  if you are

  • Terminally ill
  • in a coma,
  • seriously injured
  • have severe dementia.

Advance care directives allow you to continue receiving the treatment and care you want and decline the treatments you do not want.

 

 

doctor-desk-with-stethoscope-and-advance-care-planning-documents 2

 

4 TYPES OF ADVANCE DIRECTIVES

There are two common types of advance directives that outline the kind of health care you would or would not want.

  • A living will provides details in a legal document that specifies which treatments you would want in the event you were unable to make health care decisions.
  • A durable power of attorney is when you appoint someone to speak on your behalf, and that person you selected can make health care decisions for you if you are unable to.
  • There are other documents you may want to include with your advance care planning. This could consist of POLST and MOLST forms, organ and tissue donation information, instructions about specific things like kidney dialysis, blood transfusions, or DNR orders.

1. Living Will

A living will is a document that lists what treatments you do and do not want if you are dying or unconscious.

You can accept or refuse care through this document.

 

A living will can provide instructions on such things as:

  • The use of breathing machines
  • Whether or not you would want dialysis
  • Do you want resuscitation efforts if your heart stops beating or you stop breathing
  • Whether you would want tube feedings to provide nutrition or hydration
  • Organ or tissue donation

 

2. Durable Power of Attorney for Healthcare

A durable power of attorney for healthcare (also sometimes called a health care proxy or medical power of attorney) is a legal document which names your selected health care proxy.

This means you can choose someone to make your health care decisions for you if you can’t make your own health care decisions.

When you ask someone to be your health care advocate, this is a big responsibility, so you want to talk with them and make sure they are comfortable doing this.

 

Choosing a Health Care Proxy

When choosing someone to speak on your behalf, you want to choose a competent adult who is

  • Willing to talk to you about sensitive topics and will listen to and respect your wishes
  • Would be willing to speak for you and can handle the responsibility
  • You want to ensure this person knows and respects your values and beliefs, what is meaningful to you
  • Discuss with this person your views on what life-sustaining treatments you would or would not want. These are medical treatments, like a ventilator or feeding tube
    • In addition to naming a health care agent or proxy, you can have a living will. A living will outline your wishes about the type of health care you would want. If you have a living will review it with the person you want to have as your health care proxy, so they understand your wishes
  • This person you appoint as your health care proxy should also know who to contact if you have a medical emergency.
  • This person should also know your wishes regarding after-death wishes, such as organ donation, burial, and funeral arrangements.

 

You can appoint a health care agent or proxy to make decisions for you if you cannot make your own health care decision.

  • Being a health care proxy is a big responsibility, so you want to talk to the person and make sure it is something they are willing to do.
  • It would help if you also discussed your end-of-life wishes with this person so that they can make the best decisions for you.

 

3. Do Not Resuscitate (DNR) Order

What is a DNR?

A do-not-resuscitate (DNR) order can be part of your advance directives.

Hospital and emergency staff routinely perform cardiopulmonary resuscitation (CPR) for any patient who stopped breathing or if their heart stopped.

A DNR is an order not to have CPR if you stop breathing or your heart stops.

You can tell your doctor if you do not want CPR, and they will put the DNR order in your medical record.

 

4. Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST)

Another option for advance care planning is talking with your doctor about writing physician orders for life-sustaining treatment.

A POLST or MOLST is when your decisions about end-of-life care are written as medical orders that your health care providers must follow.

A POLST or MOLST is a form that you discuss with your doctor and is usually an option for when someone has been diagnosed with a serious illness.

The POLST or MOLST will list what care you do and do not want, for example, whether you would or would not want CPR if you stop breathing.

Your doctor usually fills it out to help ensure you get the medical treatment that you want.

 

 


 

Summary of Advance Care Planning and Types of Advance Care Directives

Advance Care Planning

Types of Advance Care Directives What is it?
Living Will A living will is an advance care document. It describes and lists what treatments you would or would not want if you are dying or unconscious. You can accept or refuse care through this document. A living will provide instructions on many decisions, for example:

  • Ventilation, which is a machine to take over your breathing
  • Tube feeding: if you would want a tube in your stomach, or an IV, to provide nutrition or hydration
  • Whether you want resuscitation efforts if your heart stops or you stop breathing
  • Organ donation – whether you want to donate your tissues, organs, or body for other patients or research
Durable Power of Attorney for Health Care or Medical  Power of Attorney A medical power of attorney is also called a durable power of attorney for health care. It is a document where you appoint someone as your health care proxy. Your health care proxy makes healthcare decisions for you if you are unable to.  You can appoint someone as your health care proxy in addition to having other advance care planning documents. Some states may combine the living will and durable power of attorney in one form.
Do Not Resuscitate Order or  DNR order A do not resuscitate order is also called a  DNR. It is an order not to have cardiopulmonary resuscitation or CPR, if you stop breathing or your heart stops. You can tell your doctor if you do not want CPR. Your doctor will put the DNR order in your medical record. A do not resuscitate order can be part of your advance directives. Also, you can have a DNR order even if you do not have advanced directives.
Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) Not every state has POLST or MOLST. Some states may have similar forms your doctor may fill out that go by different names. To have a POST or MOLST order, discuss what treatments you do and do not want. Your doctor will then write your wishes as medical orders that your health care providers must follow. This is another way to document your wishes for what care you prefer if you cannot make your own decisions.


 

 

 

senior couple discussing advance care planning and reviewing advance directives

 

Communicate Your Advance Care Wishes 

It is also a good idea to have conversations with your family and loved ones about your wishes.

This ensures they are aware of what you want regarding life-sustaining treatments.

Most importantly, make sure your preferences are in writing.

For example, in an advance planning document such as an advance directive.

 

Discussions about advance care planning can be sensitive and stressful.

Family caregivers face the challenge of being objective and staying open to their loved one’s wishes.

Meanwhile, it can be challenging to keep their feelings and opinions in check.

 

For information and suggestions on preparing for sensitive discussions, read our post Sensitive Discussions About End of Life Care

 

Updating Your Advance Directives

You can update or change your advance directives at any time, even if they have been signed.

It is an excellent idea to review these documents periodically.

That way you can modify the documents if your condition or wishes change.

If you update your documents, make sure your health care team, family, and health care proxy have the updated forms. The old forms can be destroyed.

 

State Laws and Advance Directives

Many states have their owns specific advance directive form that you must use.

Most states require that you sign the document in front of a witness.

A few states may require your signature on the form to be notarized.

This means you sign it in front of a notary licensed in the state to witness signatures.

 

Once the document is signed, provide copies to your provider, hospital, and family members.

Make sure your designated health care proxy has a copy of your signed advance directives.

Each state may have different laws regarding advance directives. Therefore, be sure to follow the laws in the state where your treatment will be provided.

 

Getting More Information about Advance Directives

Several organizations will provide information and answer questions about advance directives.

 

Two well-known organizations are:

Aging With Dignity
Aging with dignity is a nonprofit organization that has developed an easy-to-read advance care planning program called Five Wishes.  They make available an advance directive document legal in most states and is available in at least 30 languages.  You can access the document online or order it in a hard copy format.

 

Your local Area Agency on Aging can help you locate the right advance directive form. You can find your area agency phone number by visiting https://www.usaging.org/ .

elderly-couple-consulting-with-financial-advisor

 

Financial Planning

In addition to addressing your health care wishes, you should make sure your assets are protected.

It is a good idea to speak to an elder law attorney.

An elder law attorney can advise you, including whether you need a will or trust for your assets.

 

Some things to consider:

  1. A power of attorney: Appointing a power of attorney allows someone to step in and handle your financial affairs. This is beneficial if you were unable to pay bills or do your banking. There are different types of power of attorneys. However, if you want it to stay in place if you become incapacitated, then you want a durable power of attorney. Make sure that the person(s) you appoint are people you trust because there is a risk of financial abuse. For more information about what a power of attorney is and the different types of them, read our blog post: Power of Attorney: The Complete Guide.
  2. Organize important information. File all of your important paperwork in one area. In addition, make sure your family knows where it all is. It is a good idea to keep this information organized and easily accessible. For example, life insurance policies, bank account statements, retirement accounts, car title, and mortgage information. Your family may need this information.
  3. Review your financial accounts and name beneficiaries on any account you can. If you have a named beneficiary, that means once a death certificate is provided to the financial institution or insurance company, your beneficiary will receive the money. This is much easier and quicker than having to bring the asset through probate court. Follow up with each company and ensure they have the correct beneficiary. In addition, keep your named beneficiaries updated. For example, review your accounts for life insurance, IRAs, bank accounts, 401k, and other investment accounts.
  4. Set up a trust or will. A will or trust is commonly used for assets that cannot have a beneficiary. For example, a home, car, boat, or artwork. It is a good idea to consult with an attorney about all your assets. Then, the attorney can advise if a will or trust is recommended.
  5. Funeral arrangements: Many people arrange and prepay for funeral arrangements. This takes the pressure off of family members. It also ensures you have the celebration as you choose. Make sure your family is aware and they know where the paperwork is.

An elder law attorney can help make sure you have all the right documents.

Each state has different forms, requirements, and laws.

Therefore,  you want to make sure these important documents are legal and valid.

 

Make sure to talk to those you appoint as agents or executors.

It is important they understand their role and have a copy of anything they need.

You also want to make sure someone knows about the financial accounts you have beneficiaries for.

This allows them to submit a death certificate to receive the funds.

 

Where to Find Help?

Caring for family can be challenging and overwhelming at times.

There may be resources available in your community that could help you or your loved one.

For example, there may be low or no-cost meal delivery programs, help to lower prescription costs, or respite care programs available in your local community.

These programs can help your loved one and even alleviate some of your stress.

 

For a detailed list of community resources, read our post Senior Resources- Guide for Caregivers.

 

 

Summary

Advance care planning is documenting your wishes in writing so that health care professionals and your family know what care you would or would not want to receive. Advance care planning is usually documented on a legal form, for example, an advance directive or living will.  You can talk to your provider about the common end-of-life decisions, life-sustaining treatments, and your provider can also help you fill out advance directives. Communicate your wishes to your family, and let them know what type of advance directive forms you have completed.

 

 

 

 

 

References

NIH, National Institute on Aging, Advance Care Planning: Health Care Directives.

Mayo Clinic, Living Wills and Advance Directives for Medical Decisions.


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