End-of-life decisions are the choices you have to make about what life-sustaining measures you want to receive if you have a terminal illness or some other end-stage condition from which you will not recover.
End-of-life wishes are often put on the back burner. You may think this is something to think about when you are much older. However, there are often tragic events involving much younger people.
Terri Schiavo was only 26 when she went into cardiac arrest and then a persistent vegetative state. Because she did not have a health care directive, she was on life support for 15 years while her husband battled her parents in court over whether to remove her feeding tube.
Recently, Tom Sizemore, the actor from “Saving Private Ryan” and “Black Hawk Down” suffered a brain aneurysm after a stroke. He was only 61. He was in a coma with no hope of recovery. His doctors recommended that his family make end-of-life care decisions for him. He died two weeks later.
What Does End of Life Mean?
End-of-life decisions come into play when you are suffering from a terminal illness for which there is no cure, and you will not recover, such as end-stage cancer or Alzheimer’s disease. You are actively in the dying process.
You could also be in a persistent vegetative state, meaning you have some form of brain injury and are still alive but unconscious. This may mean you can no longer think, feel anything, knowingly move, or know you are alive. Depending on your situation, doctors can advise on your prognosis if this will last indefinitely without the hope for improvement.
What End-of-Life Decisions Do I Make?
You can decide your treatment options and life-sustaining treatments, and interventions. Generally, the potential decisions you will need to make include:
- Do you want life-prolonging measures?
- Do you want nutrition through feeding tubes (artificial nutrition) or hydration through intravenous (IV) methods (artificial hydration)?
- Do you want to be on a ventilator to help you breathe?
- Do you want cardiopulmonary resuscitation (CPR) if your heart stops?
- Do you want medication to provide comfort care or alleviate pain?
- Do you want hospice care or palliative care?
- Do you want to donate your organs after you die?
When thinking about these decisions, consider the quality of life you want and the emotional and financial impact these decisions have on your family members and loved ones.
What Is an Advance Medical Directive or Living Will?
An advance medical directive, also known as a living will, allows you to make your wishes for medical care known if you can’t speak for yourself. Your family will have comfort knowing they can honor your instructions rather than trying to figure out what you would have wanted. Within your advance directive, you can name someone to make your health care decisions and detail what medical treatments you want or don’t want.
Different states use different terms for naming someone to make health care decisions for you and advance directives, such as:
- Health carepower of attorney
- Health care directive
- Medical power of attorney
- Health care surrogate
- Advance medical directives
- Advance health care directive
- Living will
The person you name to make medical decisions for you is typically called a health care agent but may also be referred to as a health care surrogate, health care proxy, health care representative, attorney in fact, or some other similar term. They can access your medical records and speak to your health care providers regarding your health conditions and treatment options to help their decision-making process.
Although encouraged by medical professionals, only about one-third of American adults have any advance medical directives in place.
An advance medical directive is not a DNR (do not resuscitate order). Health care professionals follow your instructions. So, for example, if you are in critical condition but there is a chance for recovery, they will resuscitate you. However, you may put DNR instructions within your advance medical directive.
Your End-of-Life Planning Helps Your Loved Ones
While end-of-life decision-making is unpleasant, it is much worse for your family and loved ones. Even though they know you best, they will second-guess their decisions, asking themselves what you would really want. And there are often family disagreements about these difficult decisions. The best way to take the decision-making burden off of them is to create an advance medical directive.
Advance care planning is essential before a serious illness or injury, and making an advance medical directive is easy. Some states or health care providers provide forms. There are also online legal form companies that walk you through naming a health care agent and specifying your instructions. You can also have an estate planning attorney draft one for you.
Once you have your advance medical directive, it is critical to share it with your health care agent, caregivers, and health care team. You may also want to discuss your preferences for a nursing home or hospital with your decision-maker.
End-of-life decisions are not easy, but they are harder on those you leave behind.
