Advance Care Planning for More Equitable End-of-Life Care

When we think about our health and well-being, end-of-life care doesn’t always come to mind. But planning for end-of-life care allows you to live life on your terms, especially if something unexpected happens with your health. The end-of-life planning process, also called advance care planning (ACP), helps you and your loved ones prepare for health challenges you may face in the future.

Thinking about ACP is important, but it may not be easy. Assessing your changing health needs can be emotional. Talking about them with others might make you feel like you’re a burden. But ACP gives your loved ones peace of mind. When they know the type of care you want, it’s easier for them to advocate for you if you become ill.

If you’re not ready to think about ACP now, that’s okay. But decisions about your care will still need to be made. And without your guidance, those decisions may not reflect what you really want.

Talk to Your Doctor First

ACP is the best way to identify the end-of-life care you want, but only about 30 percent of Americans actually do this planning. This rate is even lower in communities of color. Since racial and ethnic disparities in health care can carry over into end-of-life care, it’s crucial for people in these communities to be clear about their wishes.

ACP can help you receive more equitable end-of-life care. Everyone has unique personal, cultural, and spiritual values that are important to them. These values can affect your medical decisions about things like aggressive treatments and pain and symptom management. They can also affect the psychological, social, and spiritual support you might want during an illness.

By going through the ACP process, you can discuss these values with members of your health care team, so they can understand what is important to you. Then you can work together and start thinking about your long-term well-being by:

Talking about what you can expect as you age. Make sure your doctor is aware of any conditions that run in your family.
Asking about palliative care and hospice care. Both types of care are important if you become seriously ill, but they have different purposes.
Sharing what’s important to you. This can include regular communication with your health care team and family involvement in decision-making.

Remember, if your health changes, you can always change your care plan.

What Does “Quality of Life” Mean to You?

ACP can help you maintain a good quality of life, even at the end of your life. Quality of life is different for everyone. What’s important is how you define it. When considering what’s important to you, you might think about how you value the following:

Spending time with friends and family
Limiting stress, pain, and suffering
Participating in faith/spiritual activities
Protecting your finances

It’s common to weigh quality of life against quantity of life. For example, a treatment may extend your life for a few months but would leave you bedbound and in pain. Think about what those months might look like, with questions like:

Do I want to be in pain for months?
Will pain medicine make it hard for me to do everyday things and interact with others?
Can I accept being bedbound and relying on others to bathe and change me?
What happens if treatment is more expensive than I anticipated?

What Does “Care” Mean to You?

Your doctor is the best person to explain how changes in your health will affect you and your caregivers. For example, if you develop a serious illness, what can you expect as your disease progresses? What medicines will you need? What are their side effects? Will you require nursing care? What will be your biggest physical and emotional challenges?

You have the power to decide what kind of care is right for you. Some people want to use all possible means to prolong life, while others prefer minimal medical intervention. Most people are somewhere in between. Ask your doctor to explain the full range of options that would be available to you, based on your condition. You might want to consider things like pain management, living arrangements, feeding tubes, ventilators, hospice, and if there are situations where you would or would not want rescue attempts such as CPR.

Once you decide what role (if any) these options will play in your end-of-life care plan, share them with your doctor. Choose a trusted person (usually a family member) as your health representative. This person will be responsible for making health care decisions on your behalf if you can no longer do so. Also consider putting your wishes in writing so that your doctor and loved ones know your preferences.

The best time to plan for end-of-life care is before something unexpected happens or you get sick. ACP lets you think in advance about the care you want. It allows you to consult with medical, legal, financial, or spiritual advisors so you can get answers to the questions that matter most to you. Then, use this information to create an end-of-life plan that gives you equitable access to care and honors your final wishes.