End of Life Care

Support for You

Most people can agree that making some healthcare decisions well in advance of illness and infirmity is a smart thing to do. After all, there's no other way to ensure that those who will be carrying out your wishes understand them. And while it may be difficult to have this conversation with loved ones — about your own care preferences during a serious illness — it's harder still to be in the painful position of having to guess what a loved one would want.

Families who avoid the subject face potential emotional trauma and hardship when trying to guess what an ill and incapacitated family member would want.

"Do you really think Dad would want to be hooked up to a machine that does his breathing for him?"

"I'm sure Mom would want a feeding tube to keep her body nourished, even though the doctor thinks her mind might be gone. Doctors can be wrong."

"The doctor says there's little hope of recovery. I wish we knew what to do."

If you are a family member of someone with a life-threatening illness, one helpful way to broach the subject is for you to make your own end-of-life care decisions first. Armed with your personal choices, you can approach a parent or spouse with questions about how they would want to be cared for. Your opening might go something like this:

"Mom, Dad, I recently wrote down a lot of information about the type of health and medical care I would want if I get seriously sick or in a major accident. As I was doing this, I realized that I didn't know what you would want done if I had to make those decisions for you."

Starting this conversation may be one of the most difficult things you will ever do. But the benefits of advanced planning are many.

Frequently Asked Questions 

The key here is to be as detailed and concrete as possible. Saying, "I'd like to die with dignity" is too vague to be useful. It's wide open to interpretation. For Bob, being treated with dignity means dying in a hospice setting, where he can shield his family from the burden of delivering potentially awkward or embarrassing care. For Mary, dignity means being at home, surrounded by loved ones.

Why should I talk about the type of care I would want if I could not speak for myself any longer?

Because only one person should be making choices about your care — and that's you. Thinking about the issues, talking about them and writing them down serves two vital purposes:

1. It helps to ensure that your values and decisions can be respected at all points in your care.
2. It relieves family members of some of the burden of decision making.

When should I have this talk? 

Anytime, as soon as possible and right now are all good answers. People put off this discussion because it's uncomfortable and could be emotionally painful and because it's not a topic that typically comes up until a health crisis occurs. But a heart attack or stroke or a car accident or any number of events could leave someone unable to communicate their wishes about their end-of-life health care. Communicate these wishes now, while you can.

How do I get started?

Often, stories in the news can provide the spark. A family in Florida fights over how to care for a daughter-wife who lies in a coma. A local hospital adds a new hospice wing to serve community members in their final months, weeks, days. And of course, the obituaries. Reading about the deaths of people you know can lead to open discussion about what constitutes a "good death."

Television shows featuring hospitals, emergency workers and scenes of CPR are prime (and prime-time) opportunities to talk about how the characters handle various situations.

Federal law requires that anytime someone stays in the hospital, patients must be asked if they have an advance directive, a legal document appointing a trusted decision-maker in case the patient is no longer able to decide.

What, exactly, should we talk about? 

Talk about everything that concerns you, everything that you have strong feelings about, and everything that could affect how you or your loved one are cared for. Talk with your family about your wishes and be sure that they talk about theirs.

Where can caregivers find help?

Hospitals and hospices often have resources available. The Family Caregiver Alliance shares information and advice. And the U.S. government has caregiver info for people with Medicare.

Questions To Get You Started 

Here are some sample questions to help facilitate a meaningful, detailed conversation:

• What fears do you have about dying?
• Who do you want to take care of you? (family, health professionals)
• Who would be the best person to make decisions for you if you cannot?
• Where do you want to die? (home, hospice, hospital, retirement home)
• Would you want to prolong your life by artificial means if you were never going to recover enough to recognize and interact with your loved ones?
• What kind of funeral service do you want? (burial, cremation, other)
• Do you want to donate your organs?
• Do you want an autopsy?
• How do you want to be remembered?
• Have you put these thoughts in writing?