Everyone will eventually face death. How prepared you are for the end of life decisions you may need to make? It can happen any time, and most people don’t want to talk about it. Fortunately, if you prepare yourself a bit, including having and Advance Directive prepared before any kind of event requiring it, YOU get to decide about your care, and YOU get to make the life or death decisions about your future care when you would otherwise be unable to do so.
If you don’t want critical decisions about your care decided by hospital staff, a government worker, or other stranger not familiar with your wants, now may be the time to prepare your advance directive.
Here is some great information provided by the Mayo Clinic:
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.
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.
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.
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.
Depending on where you live, the person you choose to make decisions on your behalf 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
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 the role.
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 your preferences for other medical decisions, such as pain management or organ donation.
In determining your wishes, think about your values. Consider how important it is to you to be independent and self-sufficient, and identify what circumstances might make you feel like your life is not worth living. Would you want treatment to extend your life in any situation? All situations? Would you want treatment only if a cure is possible?
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 the following medical decisions:
- Cardiopulmonary resuscitation (CPR) restarts the heart when it has stopped beating. Determine if and when you would want to be resuscitated by 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 breathe on your own. 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 mouth 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 health care 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. To establish DNR or DNI orders, tell your doctor about your preferences. He or she will write the orders and put them in your medical record.
Even if you already have a living will that includes your preferences regarding resuscitation and intubation, it is still a good idea to establish DNR or DNI orders each time you are admitted to a new hospital or health care facility.
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, AARP and the National Hospice and Palliative Care Organization.
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 health 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. By having these conversations now, you help ensure that your family members clearly understand your wishes. Having a clear understanding of your preferences can help your family members avoid conflict and feelings of guilt.
- 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.
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.
- About every 10 years. 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).
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. Your doctor will fill out the form based on the contents of your advance directives, the discussions you have with your doctor about the likely course of your illness and your treatment preferences.
A POLST stays with you. If you are in a hospital or nursing home, the document is posted near your bed. If you are living at home or in a hospice care facility, the document is prominently displayed where emergency personnel or other medical team members can easily find it.
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. The above information is from the Mayo Clinic.
If you think preparing your advance directives is a good idea, you can do so with ease and at little or no cost. Most doctors offices will provide with you with a free living will upon request. You can also search for the forms online and one of the many available to you.
As always, if you need any assistance, please reach out to us at Patient Advocate Alliance for some help.
Ms. Jenn Landers | Patient Advocate Alliance LLC Edited by Dr. Justin Groode