Ensure confident end-of-life decisions. Providing clear instructions in advance will reduce the guilt and the possibility that your parent’s wishes won’t be followed.
Your elderly parents may be doing fine now, still living alone and dealing with no major health issues. As your parents continue to age, however, the likelihood of developing a chronic illness resulting in an inability to make healthcare decisions on their own behalf increases. Heart disease, Diabetes, and other illnesses can lead to a progressive decline in both physical and mental health. A serious accident or health complication could suddenly put Mom or Dad in a situation where they aren’t able to make informed treatment decisions on their own.
The possibility of compromised decision making due to Alzheimer’s or other dementia can be another reason your elderly parents won’t be able to make treatment decisions. Over a period of years, those with Alzheimer’s lose their ability to understand what’s going on around them and are incapable of making decisions on their own. Since there’s no cure for the disease, sufferers get increasingly worse both physically and mentally. Medical tests become harder for them to tolerate and the risks of side effects increase. Because of their diminished mental capacity, people living with Alzheimer’s don’t understand what’s happening and may become fearful or agitated. (dementia-directive.org, n.d.)
Enter Advanced Directives
This is where an advance directive comes in. The Patient Self-Determination Act, passed by Congress in 1991, empowers patients to become active participants in any medical decisions that affect the condition and length of their life. These decisions include being able to accept or reject treatments and creating an advance directive which identifies their treatment wishes and a surrogate decision maker. (oig.hhs.gov, 1991)
Although terminology differs on a state by state basis, Advance Directive is a broad term which includes living wills, medical powers of attorney, mental health care directives, and health care proxy documents.
An advance directive is a legal document that identifies the medical treatments your parents would want if they can’t make decisions on their own. It states the patient’s wishes about care and identifies another person, called a proxy or agent, who has the power to carry out those wishes. The individual identified as the proxy will have full access to the patient’s medical information under federal privacy laws (HIPAA). The proxy will be able to speak with doctors and make decisions about tests, procedures, and treatments.
Without an advance directive, doctors will take every possible measure to prolong a patient’s life. These measures could result in unwanted tests and treatments if your parent values the quality of life over quantity. By the same token, if they want to live as long as possible, regardless of the treatments required, those wishes need to be known as well.
What happens if there is no Advance Directive?
With no advance directive, family members may disagree about treatment, each one thinking they know what’s best for your parent. A decision to resuscitate or use a feeding tube for a patient who is unresponsive is difficult enough without the added pressure of family members who can’t agree on the direction. Not only does it generate hard feelings and high emotions within the family, but it also puts the hospital staff in the position of having to decide who to listen to if a quick decision must be made.
Forty-four states have “default surrogate consent laws.” These laws provide a hierarchy of authorized family decision-makers. The hierarchy usually starts with the spouse at the top, then goes on to adult children and other family members. Over 20 states specify that a “close friend” familiar with the person’s values can make decisions if none of the listed family members are available. (Americanbar.org, 2014)
The ideal situation is for your parent’s care to be decided based on their wishes using an advance directive. Having one in place will reduce anxiety and increase your confidence that you’re doing what Mom or Dad wants.
Advance Directives: The documents
The two most common types of advance directives are:
- A Living Will which is a legal document that describes when attempts to prolong life such as the use of feeding tubes or artificial life support should be stopped or started. It also describes how aggressive they want doctors to be when treating them. For example, your parent may want to have a treatment that keeps them comfortable, such as the use of pain medications, but not a feeding tube. Living wills are not necessarily recognized across multiple states. If your parent spends a significant amount of time in more than one state, they should create a separate living will for each state. A Living Will takes effect when:
- The individual can no longer make health care decisions on their own and
- Their doctor has diagnosed them with a terminal illness, or they’re in a persistent vegetative state.
- A Health Care Proxy, also called a durable power of attorney for health care takes effect when a person is unable to make health care decisions on their own. It makes the patient’s wishes known about the type of healthcare treatments they want or don’t want. Requirements vary from state to state as to what goes into a health care proxy. Because a living will only takes effect upon terminal illness or persistent vegetative state, your parents will probably also want to complete a health care proxy. By documenting their wishes, your parents can rest assured that they have given you guidance on the type of medical care they wish to receive.
Advance directives need to be in writing. Every state has its own set of forms. Visit caringinfo.org to download the form for your state. A sample advance directive specifically geared towards dementia can be found at dementia-directive.org.
Keep the original documents in an easily accessible place and provide copies to family members or anyone who may be with your parent at the time an advance directive may be needed.
Directives can be changed at any time and should be reviewed whenever a life-changing event occurs such as the death of a spouse or being diagnosed with a terminal illness.
How to talk about Advance Directives
Starting a conversation with your parents about creating advance directives can be stressful for all parties. Reassure your parent that they have control and the final decision on whether to create an advance directive. Let them know that the directive can be revoked or changed if their wishes change. Emphasize the need to make these decisions before a crisis happens. A few discussion topics are:
- The importance of knowing their wishes before something catastrophic happens
- How they feel about treatment for a situation where they become brain dead or terminally ill
- Their fears and concerns about certain types of treatment such as dialysis or feeding tubes.
- Current health conditions and how they might progress
- What their idea of dying with dignity means
A good resource for this discussion is the ‘Having the conversation’ tool. It was developed by The Conversation Project, a public engagement campaign focused on ensuring everyone’s wishes for end of life care are expressed and respected. It can be downloaded from theconversationproject.org.
After you’ve helped your parents complete the advance directives, give copies to the person identified as proxy, as well as family members and close friends who might be contacted if your parent becomes seriously ill. It’s required by Federal law for hospitals and nursing homes to ask during the admissions process if an advance directive has been completed. You want to ensure that anyone likely to be with your parent at that time knows about the advance directive so it can be included with your parent’s medical record.
Note that it’s not sufficient to have the advance directive at your parent’s primary care physician’s office as these records may not be available to the hospital. Providing clear instructions in advance will reduce the guilt and the possibility that your parent’s wishes won’t be followed.
- Advance Directive for Dementia (n.d.) Retrieved from https://dementia-directive.org/
- Health and Human Services (1993). Office of the Inspector General. Patient advance directives: early implementation experience. Retrieved from
- Default Surrogate Consent Statutes (2014) Retrieved from https://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf
- Download Your State’s Advance Directives (n.d.) retrieved from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
- Types of advance health care directives (n.d.) Retrieved from https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/types-of-advance-health-care-directives.html
- The Conversation Project (n.d.) Retrieved from https://theconversationproject.org/