Caring for a Terminally-ill Loved One - Making Compassionate Choices
Legal Considerations – Advance Directives
Legal Considerations – Advance Directives
Please Note: The information provided here is for information only and should not be considered legal advice. Please contact an attorney or your healthcare organization for preparation of an Advance Directive.
An advance directive, also known as a living will, personal directive, advance healthcare directive, medical directive or advance decision, refers to oral or written instructions stating your preferences for future medical care, and is only used in the event you are unable to communicate those preferences for yourself because of illness or incapacity.
Such a directive can apply to any healthcare decision but it is normally executed in an end-of-life healthcare context. Advance directives were brought into being because proponents believed that every patient should have the right of autonomy and self-determination in choosing medical care.
Advances in medical technology over the last half century resulted in the use of “futile treatments” that would keep a patient alive but with virtually no benefit to the patient’s quality of life and little consideration to the anguish & financial stress such treatments caused the patient’s family.
Two types of advance directives were created, the Living Will and the Medical Power of Attorney. The Living Will allows you to put into writing your specific wishes about medical treatment in the event you are unable to communicate those wishes due to a prevailing medical condition. The Medical Power of Attorney allows you to appoint someone you trust to make the decisions about your medical care for you in the event you are unable to personally make those decisions due to your medical condition. This type of directive may also be referred to as a Health Care Proxy. These two types of directives work hand-in-hand. One lets you specify your wishes and the second identifies someone, that you designate, who will assure that those wishes are upheld.
Your right to accept or refuse treatment is protected by constitutional and common law. Both state and federal laws require healthcare facilities that receive Medicaid and Medicare funds to inform you of your right to execute these advance directives prior to receiving any treatment from these health care facilities. The specific details of the applicable laws for implementing these directives are determined individually by each state. You can obtain free copies of these documents with instructions for your state from American Association of Retired Persons (AARP) website.
Completing your documents
As you might expect, expressing the details of your wishes for medical treatment can be a daunting task. One reason is that we have difficulty thinking about life-threatening conditions pertaining directly to ourselves. Another reason is that there are a variety of medical situations to consider. The American Association of Retired Persons (AARP) website provides useful information that will give you a starting point for determining what you should consider. However, we recommend that you contact a professional to help you in making these critical decisions and completing these forms.
It is important for caregivers, who often are tasked with the responsibilities for making such decisions for their loved one, to be aware that these documents may or may not exist. If they do exist, review them with your loved one to make sure that you understand their wishes so they may be properly executed. If they do not exist, then it is imperative that you get assistance to have them created.
The choice is yours – you can make the decisions for yourself now while you can or leave them to be made by others who may choose futile treatments on your behalf.
A Word of Caution - Moral Beliefs & Medical Staff
In spite of all good intentions to plan your own death, there can be unintended conflicts that can arise putting your advance directive wishes into jeopardy. In the book The Good Death, an exploration of dying in America, the author Ann Neumann personally discovered such a conflict. She was in need of immediate care in a small town and was taken to the closest hospital, which happened to be a Catholic hospital, and the hospital would not honor her advance directive because it conflicted with the staff’s moral beliefs. In a life-threatening situation where urgent care was necessary (or not wanted per the advance directive) there may be no time to have a court act in your behalf. This may be a topic to bring up with your attorney when creating your advance directive and also something to be aware of when choosing a hospital in an emergency.
A Case in Point:
This example, adapted from Approaching Death -- Improving End of Life Care.
When a loved one receives a terminal diagnosis, there is a natural tendency to want to do everything in our power to reverse that diagnosis or even attempt to avert the inevitable. This example illustrates problems that patients and families can encounter with high-technology intensive care that is aimed solely at life-prolonging measures. Such decisions require us to first give consideration to the wants and needs of the dying person and second to the concerns of family members.
Horace Bowman was a 74-year-old man who suffered a massive heart attack and was rushed to a major hospital center. He smoked a pack of cigarettes a day in spite of the fact that he had problems with angina and peripheral vascular disease. He had not completed any advance directives prior to his heart attack and was uncomfortable discussing his possible future ill health.
His daughter arrived finding him unable to communicate because he was intubated and semi-conscious. When he was alert, he clearly was experiencing pain and agitation. She found that there were several physicians involved in her father's care, none of whom were willing to talk with her for more than a couple of minutes about her father's chances of recovery. The cardiac surgeon insisted that surgery was the "only hope." She felt pressured to sign the surgery consent forms.
As Mr. Bowman was being prepared for emergency surgery, he went into cardiac arrest and, despite prolonged resuscitation, died. His daughter felt that the intensive care environment deprived her of the opportunity to spend time with her father and made informed decision-making difficult if not impossible, and subjected her father to intrusive tests and interventions that would make her memory of his dying a continuing source of guilt and regret.
© 2003-2022 HEAL Project
All rights reserved
www.healproject.org