Making End-of-Life Care Decisions

Although no one wants to think about it, end-of-life care is an important decision to make and a vital discussion to have with your doctor to ensure your wishes are respected. Whether you are sick or in good health, it’s important to think about the kind of care you would like to have in the event of a medical crisis. Keep in mind that there is no right or wrong decision. The best decision is the one that makes sense to you.

What Is End-of-Life Care?

End-of-life or advanced care planning gives you autonomy as a patient. As a basic right, you should have the ability to make key decisions about your healthcare and know that your choices are respected.

If you are facing a terminal illness, your decision about end-of-life care will determine the type of treatment you wish to have. Based on your care team’s recommendations, you may wish to have aggressive treatment to extend your life. You may wish to have palliative treatment so you remain comfortable. If your heart stops, you may or may not wish to be resuscitated. If your breathing stops, you may or may not want to be put on a ventilator.

While we may be more likely to think about these decisions when someone is older or facing a serious illness, the truth is, all of us should think about what we would want if we had a medical crisis, such as a massive heart attack or stroke. In the U.S., by default, medical professionals provide aggressive treatment, i.e. CPR, intubation, etc. This may be appropriate and desirable for some patients, but not necessarily by others. By considering what steps you want taken, you are empowered to receive the care you want.

Keep in mind that end-of-life care doesn’t mean not helping you in a medical emergency. But it does mean that if you decided you did not want aggressive treatment to revive you, or you chose not to have chemotherapy or a surgery that offered little hope of healing but could decrease your quality of life, those wishes would be honored.

When Should You Have End-of-Life Discussions?

The best time to make decisions about the care and treatment in case of a medical crisis is before you need it.  Ideally, it would occur with you and your primary care physician, in an office visit, before a health crisis occurs.

Because this discussion is so vital to patient care, at Orlando Health, we have launched an initiative for doctors to have this conversation with all patients who are 65 years and older, upon admittance into the hospital. This ensures that we know, and are able to respect and follow your wishes.

How to Start the Conversation with Your Doctor

When you are making advanced care decisions, it is vital that you have a clear understanding of your illness (if any) and your choices. The Conversation Project, a public engagement initiative, offers tips on how to start this conversation with your doctor and your family. Initial questions for your doctor might be:

• Can you tell me what I can expect from this illness in 6 months? 1 year? 5 years?
• What are some possible big changes in my health that my family should be prepared for?
• What can I expect to improve or not improve if I choose these treatment options?
• What can I expect if I decide to do nothing?

As physicians, we should also ask what it is you want. Unless I have asked what do you want out of life-- what are your goals and what do you want to be able to do-- I might make assumptions on your behalf that may not hold true. As good stewards of healthcare and your advocates, we must partner with you, providing you with the information and options so you are well-equipped to make these decisions.

Making End-of-Life Decisions for a Loved One

An end-of-life discussion may not be about you, but instead could be for a spouse or other family member. While this can be a painful conversation to have, it is an important one so that you can accurately represent your loved one’s wishes.

Sometimes a decision has to be made for a loved one who is unable to make the decision for themselves. To make this difficult choice, you might consider what you think the person would want, what is in the best interest of the patient or what you’d want in their place.

Final Thoughts

Remember that with advanced planning for the end of life, you are not giving up on medical treatment. You will still receive expert treatment and care to help you recover. But by making your wishes for the type of medical interventions you prefer known to your doctor and family, you can decide how you live the rest of your life.

It is important that both doctors and patients educate themselves around end-of-life care. As we discuss it more and become more comfortable with the topic, it will become a more natural part of our care process, and will eventually become something we discuss just like we talk about options for surgeries, medications and other types of treatments we provide.