One Conversation Can Make All the Difference

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people discussing end-of-life care

Imagine you're at the hospital, and you can't speak. Do you know who would be able to make important decisions about your healthcare?

These are challenging times, and there are many things that are out of our control. But, there are some things we can do to help us be prepared — both for ourselves and the people we care about— when it comes to making important life decisions.

The Importance of Talking About End-of-Life Planning

Advance directives are legal documents that explain your wishes in case you can't communicate them for yourself. It's also where you might designate a healthcare proxy to advocate for you and make some hard decisions in an emergency.

Many people avoid these topics because it can be hard to talk about end-of-life care and other potentially scary medical decisions. But advance planning is important, and there are resources available to help guide you through the process.

“It’s never too early. All adults over the age of 18 should have a healthcare proxy, so that they have a decision maker prepared in the case of an emergency or they are unable to speak for themselves,” said Dr. Diane Dietzen, medical director of palliative care services  at Baystate Medical Center.

April is National Healthcare Decisions Month (and Healthcare Decisions Day is April 16). It's the perfect opportunity to get the conversation going with loved ones about wishes for end-of-life care.

The annual event is sponsored by The Conversation Project, a program of the National Institute for Healthcare Advancement.

“It’s all about being prepared for any healthcare emergency by understanding the value of advance healthcare planning. The goal is to reduce the number of tragedies that occur when a person’s wishes are unknown, and improve the ability of healthcare facilities and providers to offer informed and thoughtful guidance about advance healthcare planning to their patients,” Dr. Dietzen said.

End-of-life planning can also save your family additional heartache if something unexpected comes up.

“Making your wishes known in advance by completing a healthcare proxy and an advance directive is extremely helpful to physicians in knowing whose direction to follow in the event of family controversy over treatment, which could otherwise lead to the courts becoming involved,” Dr. Dietzen said.

How to Create an Advance Directive

The advance directive is based on your specific wishes, which means that there is more than one way to approach end-of-life planning.

So, where should you start?

Nathan Kottkamp, NHDD founder and chair, shares his advice for most people:

  1. Designate an agent. By designating an agent, you're naming the right person to speak for you.
  2. Create a living will. With a living will, you can document your wishes to the best of your ability.
  3. Describe your wishes, rather than using "always" and "never." Talk about what matters most to you. Think about what you would want if you became seriously ill. This way, your designated agent and caretakers will better understand how to speak for you.
  4. Share with your loved ones, your primary care provider, and other doctors.
  5. Make changes as often as needed. Your advance directive is a living document that you can easily change over time.

According to a Survey of Californians by the California HealthCare Foundation and Kaiser Family Foundation Serious Illness in Late Life Survey, 92% of people say that talking with their loves ones about end-of-life care is important. But only 32% have actually done so and say that they haven’t had the conversation because they don’t want to upset their loved ones.

“These discussions are always hard to begin, but often are very rewarding and meaningful for your family and loved ones,” Dr. Dietzen said.

Types of Advance Directives

Once you have had that important conversation, there are two important legal documents – a healthcare proxy and a living will – to complete in order to make sure that your wishes are clearly stated and respected when the time comes.

Healthcare Proxy

A healthcare proxy is a simple legal document allowing you to name someone you know and trust to make healthcare decisions for you if, for any reason and at any time, you can’t make or communicate those decisions.

Dr. Dietzen noted that is important to make sure the person you identify as your proxy is someone who understands your wishes.

“We often think of our spouse or parents as being able to make those decisions for us, but they may not be the right person because of the emotional burden their decision will carry. That’s why it is so important to put your wishes in writing, and to select someone who is emotionally able to carry out your wishes and who can answer any questions the doctor may have about your care,” she said.

A Living Will

A living will is a legal document in which you state your wishes regarding end-of-life medical care. This includes the types of treatments you do and do not want such as “do not resuscitate (via CPR)" or “intubate” to help the patient breathe.

According to Mass. Medical Society, Massachusetts is one of only three states that recognizes healthcare proxies but does not recognize living wills. But they say living wills are still potentially useful “because they guide agents and physicians about the types of choices a person would make."

What is National Healthcare Decisions Day (NHDD)?

NHDD was founded by a healthcare lawyer named Nathan Kottkamp with the aim of providing "clear, concise, and consistent information on healthcare decision-making." The Conversation Project oversees the annual observance in April to inspire, educate and empower the public and providers about the importance of advance care planning.

Next Steps

If you're ready to get started, you can visit our Healthcare Proxy and Advance Directives page to download the forms and end-of-life documents you'll need to make your wishes known.

Make Your Wishes Known

Healthcare Decisions Month is a great time to get proactive about advanced care planning. Learn how to start the conversation, and then download and complete your healthcare proxy and advance directive forms.

Who Will Speak for You?

Dr. Maura Brennan discusses advanced care planning.

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