Living wills and advance directives describe your preferences for end-of-life care. These documents speak for you when you’re not able to speak for yourself.
Living wills and other advance directives are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. Advance directives guide choices for doctors and caregivers if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.
By planning ahead, you can get the medical care you want, avoid unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief. You also help reduce confusion or disagreement about the choices you would want people to make on your behalf.
Advance directives aren’t just for older adults. Unexpected end-of-life situations can happen at any age, so it’s important for all adults to prepare these documents.
Power of attorney
A medical or health care power of attorney is a type of advance directive in which you name a person to make decisions for you when you are unable to do so. In some states this directive may also be called a durable power of attorney for health care or a health care proxy.
The person you name may be a spouse, other family member, friend or member of a faith community. You may also choose one or more alternates in case the person you chose is unable to fulfill his or her role.
Depending on where you live, the person you choose to make decisions may be called one of the following:
- Health care agent
- Health care proxy
- Health care surrogate
- Health care representative
- Health care attorney-in-fact
- Patient advocate
Choosing a person to act as your health care agent is important. Even if you have other legal documents regarding your care, not all situations can be anticipated and some situations will require someone to make a judgment about your likely care wishes. You should choose a person who meets the following criteria:
- Meets your state’s requirements for a health care agent
- Is not your doctor or a part of your medical care team
- Is willing and able to discuss medical care and end-of-life issues with you
- Can be trusted to make decisions that adhere to your wishes and values
- Can be trusted to be your advocate if there are disagreements about your care
A living will is a written, legal document that spells out medical treatments you would and would not want to be used to keep you alive, as well as other decisions such as pain management or organ donation.
In determining your wishes, think about your values, such as the importance to you of being independent and self-sufficient, and what you feel would make your life not worth living. Would you want treatment to extend life in any situation? Would you want treatment only if a cure is possible?
Have discussions with your primary care doctor, your health care agent, family and friends about your personal wishes. Resources for organizing your own thoughts and having conversations with others about medical care and end-of-life care are available through the American Bar Association, the Conversation Project and the Center for Practical Bioethics.
You should address a number of possible end-of-life care decisions in your living will. Talk to your doctor if you have questions about any of these issues:
- Resuscitation restarts the heart when it has stopped beating. Determine if and when you would want to be resuscitated by cardiopulmonary resuscitation (CPR) or by a device that delivers an electric shock to stimulate the heart.
- Mechanical ventilation takes over your breathing if you’re unable to do so. Consider if, when and for how long you would want to be placed on a mechanical ventilator.
- Tube feeding supplies the body with nutrients and fluids intravenously or via a tube in the stomach. Decide if, when and for how long you would want to be fed in this manner.
- Dialysis removes waste from your blood and manages fluid levels if your kidneys no longer function. Determine if, when and for how long you would want to receive this treatment.
- Antibiotics or antiviral medications can be used to treat many infections. If you were near the end of life, would you want infections to be treated aggressively or would you rather let infections run their course?
- Comfort care (palliative care) includes any number of interventions that may be used to keep you comfortable and manage pain, while abiding by your other treatment wishes. This may include being allowed to die at home, getting pain medications, being fed ice chips to soothe dryness, and avoiding invasive tests or treatments.
- Organ and tissue donations for transplantation can be specified in your living will. If your organs are removed for donation, you will be kept on life-sustaining treatment temporarily until the procedure is complete. To help your agent avoid any confusion, you may want to state in your living will that you understand the need for this temporary intervention.
- Donating your body for scientific study also can be specified. Contact a local medical school, university or donation program for information on how to register for a planned donation for research.
Do not resuscitate and do not intubate orders
You don’t need to have an advance directive or living will to have do not resuscitate (DNR) and do not intubate (DNI) orders. You can make your preferences known to your physician, who can write the orders and put them in your medical record.
If you have a living will, however, be sure to mention it it whether you have a DNR or DNI order on file.
Creating advance directives
Advance directives need to be in writing. Each state has different forms and requirements for creating legal documents. Depending on where you live, a form may need to be signed by a witness or notarized. You can ask a lawyer to help you with the process, but it is generally not necessary.
Links to state-specific forms can be found on the websites of various organizations such as the American Bar Association and the National Hospice and Palliative Care Organization. The American Bar Association also has a basic, easy-to-use advance directive form that can be used in most states.
Review your advance directives with your doctor and your health care agent to be sure you have filled out forms correctly. When you have completed your documents, you need to do the following:
- Keep the originals in a safe but easily accessible place.
- Give a copy to your doctor.
- Give a copy to your heath care agent and any alternate agents.
- Keep a record of who has your advance directives.
- Talk to family members and other important people in your life about your advance directives and your health care wishes.
- Carry a wallet-sized card that indicates you have advance directives, identifies your health care agent, and states where a copy of your directives can be found.
- Keep a copy with you when you are traveling.
Reviewing and changing advance directives
You can change your directives at any time. If you want to make changes, you must create a new form, distribute new copies and destroy all old copies. Specific requirements for changing directives may vary by state.
You should discuss changes with your primary care doctor and make sure a new directive replaces an old directive in your medical file. New directives must also be added to medical charts in a hospital or nursing home. Also, talk to your health care agent, family and friends about changes you have made.
You should consider reviewing your directives and creating new ones in the following situations:
- New diagnosis. A diagnosis of a disease that is terminal or that significantly alters your life may lead you to make changes in your living will. Discuss with your doctor the kind of treatment and care decisions that might be made during the expected course of the disease.
- Change of marital status. When you marry, divorce, become separated or are widowed, you may need to select a new health care agent.
- Change in wishes. Over time your thoughts about end-of-life care may change. Review your directives from time to time to be sure they reflect your current values and wishes.
Physician orders for life-sustaining treatment (POLST)
In some states, advance health care planning includes a document called physician orders for life-sustaining treatment (POLST). The document may also be called provider orders for life-sustaining treatment (POLST) or medical orders for life-sustaining treatment (MOLST). Your doctor fills out this form.
A POLST is intended for people who have already been diagnosed with a serious illness. This form does not replace your other directives. Instead, it serves as doctor-ordered instructions — not unlike a prescription — to ensure that, in case of an emergency, you receive the treatment you prefer.
A POLST stays with you. If you are in a hospital or nursing home, the POLST is posted near your bed. If you are living at home or a hospice care facility, the POLST is prominently displayed where emergency personnel or other medical team members can easily find it.
Your doctor will fill out the form based on the contents of your directives, discussions with your doctor about the likely course of the illness, and your treatment preferences.
Forms vary by state, but essentially a POLST enables your doctor to include details about what treatments not to use, under what conditions certain treatments can be used, how long treatments may be used, and when treatments should be withdrawn. Issues covered in a POLST may include:
- Mechanical ventilation
- Tube feeding
- Use of antibiotics
- Requests not to transfer to an emergency room
- Requests not to be admitted to the hospital
- Pain management
A POLST also indicates what advance directives you have created and who serves as your health care agent. Like advance directives, POLSTs can be canceled or updated.