April 16 is National Healthcare Decisions Day (NHDD). It was created “to inspire, educate & empower the public & providers about the importance of advanced care planning.”
In light of this day and its important purpose, we are joining in the discussion to educate others on the importance of advance planning and how to get started.
What happens when I can no longer make healthcare decisions for myself?
Most often, your family or spouse becomes responsible for making medical choices on your behalf.
These decisions can be quite serious depending on your condition, and may range from what medication you receive, to the decision to stop treatment entirely.
What does “advance planning” mean?
Advance planning means to specify your medical treatment preferences in the event you are no longer able to express these wishes yourself. Anyone over 18 years of age can participate in advance planning. You can also appoint a healthcare proxy or agent to make decisions for you.
Indicating your own treatment wishes with advance planning ensures you get the care you intended.
You know why it’s important to plan your healthcare in advance, now let’s understand the types of decisions you will be making.
What does “life support” mean?
Life support refers to the methods of treatment (equipment or medical intervention) used by healthcare professionals to extend a patient’s life by reviving or artificially restoring a major bodily function, such as breathing or heartbeat.
Examples of life support include:
- Cardiopulmonary resuscitation (commonly known as CPR) is used in the event of cardiac arrest (when an individual’s heart suddenly stops beating). It is a form of hands-on treatment that combines timed chest compressions and mouth-to-mouth breathing to restore blood flow to the brain and heart. This method buys time until an individual can be taken into the hospital and put on a defibrillator.
- Defibrillators are devices that send an electric pulse to the heart to shock it back into rhythm. Think of the paddle device you may have seen in movies. The portable version of this device, used by police officers, fire personnel, flight attendants and other public authorities, is called an Automated External Defibrillator (AED).
- Mechanical ventilation (also called mechanical respiration) uses a breathing machine to restore air to the lungs.
- Dialysis (also referred to as renal replacement therapy) artificially replaces kidney functioning by removing waste and water from blood through a special filter (hemodialysis) or plastic tube (peritoneal).
- Pacemakers are inserted into an individual’s chest to control the heart’s rhythm.
- Feeding tube and intravenous re-hydration are both artificial forms of feeding or restoring nutrition to a patient (complete definitions below).
What does “artificially administered food and water” mean?
When a patient cannot eat food or drink water naturally because they are unable to swallow or chew, they may have fluids artificially administered in one of two ways.
- Feeding tube: A tube is inserted into a patient’s stomach, whereby formula is fed directly into the stomach cavity.
- Intravenous re-hydration: Restores hydration by inserting an IV solution consisting of electrolytes, vitamins and other medications into the patient’s blood steam.
What does “comfort or palliative care” mean?
Comfort care is exactly how it sounds. It’s focused on preserving the patient’s comfort, whether that means administering medication to relieve pain or symptoms, or providing a comfortable environment for the patient to rest. When an individual expresses wishes for comfort care, the nurses or doctors use any means necessary to lower pain or suffering in a patient’s given situation.
Terms to Know
- DNR (Do Not Resuscitate) implies an individual does not want CPR or a defibrillator to shock their heart back into rhythm if they experience cardiac arrest.
- Terminal illness means an individual likely has an incurable disease that will result in death.
- Vegetative state occurs when patients fall into impaired consciousness and there is considerable damage to the brain.
- Coma is an indefinite period of deep unconsciousness brought on by severe injury.
State Specific Advance Planning Laws
While the Constitution of the United States declares its citizens the right to make their own healthcare decisions, each state has its own laws regarding advance directives.
The Patient Self-Determination Act (PSDA) allows all individuals to accept or refuse medical treatment, as well as draft an advance directive and assign a healthcare proxy. This Act also requires hospitals to inform patients about advance planning.
Although you are free to be as general or specific in your wishes as you want, your personal directive will be reviewed by healthcare professionals before treatment and carried out in compliance with state laws. In other words, some states limit the types of healthcare decisions you can make, and for that reason, healthcare professionals can only carry out what is legally permitted.
What documents are used in Advance Planning?
- Living Will (also called a Healthcare Directive, Personal Directive, Advance Directive or Advance Decision)
- Medical Power of Attorney (also called Durable Power of Attorney, Healthcare Power of Attorney or Healthcare Proxy)
A living will is a legal document in which you specify your medical wishes, including the type of treatment you want (or don’t want). This document takes effect when you are no longer able to communicate your wishes for treatment, which can occur when you are terminally ill, in a vegetative or comatose state as a result of an accident, or you’ve experienced other trauma leaving you mentally incapacitated.
Advance planning empowers you to make choices for yourself and your health in compliance with your beliefs. In addition to including the type of treatment you wish to receive, you can also write a statement of your beliefs and values.
To start thinking about what you want, ask yourself these questions:
- How do I define quality of life?
- How much disability could I have and still live with?
Medical Power of Attorney
A medical power of attorney is another legal document (you can make in conjunction with your living will) that appoints a health care representative (proxy, agent or surrogate) to make decisions on your behalf if you can no longer make them for yourself.
Here are some questions to think about when appointing a healthcare representative:
- What person do I want making medical decisions on my behalf? Who do I trust with my health?
- In what event should this representative become empowered to make these decisions?
- How do I want this representative to decide on my treatment? Should I include instructions?
You can assign more than one healthcare representative in your medical power of attorney. Just be sure to specify the degree of their powers, including whether the two representatives should act as a team (make joint decisions) or successively (as alternates).
Questions to Get Started
Below are some questions designed to inform you about the types of decisions you will make when creating a living will. Please note that there will be exceptions, as well as additions, which are specific to each individual’s case.
It’s not possible to specify your wishes for every single condition or illness, but it is helpful to consider your wishes for the common conditions (terminal, vegetative and coma), as well as the use of treatments as they pertain to each case or their use in general. Like previously mentioned, you can include specifics in your living will or approach it more generally in regards to your treatment as a whole. With that said, you don’t want to leave too much up to interpretation.
- Do I wish to be hospitalized or stay at home if I am terminally ill, in a vegetative state or coma?
- Which life support procedures do I want/don’t want if I am terminally ill, in a vegetative state or coma?
- Do I wish to be given food and water artificially if I am terminally ill, in a vegetative state or coma?
- Do I wish to receive comfort/palliative care if I am terminally ill, in a vegetative state or coma?
- What are my wishes regarding life sustaining procedures in general?
- What are my wishes if I am diagnosed with Alzheimer’s or dementia?
- In what (if any) event would I specify DNR?
- Do I want tests if there is no chance of recovery?
- Do I want surgery if there is no chance of recovery?
- Do I wish to be given antibiotics?
- Do I wish to given blood transfusions?
- What are my wishes for treatment if I am pregnant? (State laws regarding pregnancy in advance directives vary across states. Your treatment may depend on risks, time into pregnancy and policies of the hospital, so keep that in mind when addressing this question.)
- Is it important that I have comfort care in my last minutes? Or do I wish to remain alert, even if I’m in pain?
- Do I wish to donate my organs after death?
- What kind of funeral arrangements would I like to specify?
Now that you have read through the terms and questions, you have taken the first step towards taking control of your health by educating yourself on the process of advance planning.
These decisions don’t happen overnight, so try not to feel overwhelmed with making a choice today.
Talking to your friends and family can help you work through your feelings on the subject and make them aware of your wishes. Consult your family doctor as well. He or she will be able to help you understand complex decisions by explaining the risks and benefits of life sustaining treatments.
Once you do create your document, you can always update its contents. In fact, we encourage you to revise it from time-to-time to make sure it still coincides with your beliefs—especially if you experience major life changes, such as a diagnosis or death in the family.
Let your family know if you update your advance directive. Distribute copies to loved ones and your family doctor, as well as your healthcare representative. This ensures everyone has the document on hand in case of an emergency.
The best advice? Don’t wait for dire situations to create your healthcare directive. Thinking about your wishes and acting on it now will prevent burdening your loved ones with your future healthcare decisions.