HEALTHbeat extra: Take charge with a living will

In this issue of HEALTHbeat:
• Take charge with a living will
• Tips on being a good agent

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July 10, 2008

Take charge with a living will

The start of a new year is a fresh beginning. It's also traditionally a time to plan our goals and resolutions for the year ahead. As you run through the usual list of aims for the year — exercise more, lose weight — it's worth beginning to consider planning ahead and documenting your health care wishes, looking into the future. If you've been putting this planning off until now, why not make this the year you arrange for your future?

When someone you love won’t create an advance care directive

If someone you love doesn’t have an advance care directive, feel free to ask about it. Explain why it’s important to have one, and that it would make you feel better if you knew this was taken care of. You may want to say something like: “I love you, and I wouldn’t want to do anything you didn’t agree with if a situation came up that left you unable to tell me what you wanted.”

As you probably know, you can rarely get people to do something they don’t want to do. If your loved one is reluctant to discuss this, you can try to figure out why and try to address it. For example, if the person doesn’t “want to think about death,” you can point out that you’re really talking about quality of life, not death, and promise to keep the conversation as brief as possible.

If you still meet with refusal, don’t push the issue too much. Be ready to drop the subject if the person gets angry or upset, but explain that you’ll want to discuss it later. Then follow up. If you know your loved one’s doctor or religious adviser, you can ask him or her for help.

It's never easy to talk about serious illness, disability, or death. But a little bit of uncomfortable conversation can make all the difference should you — or a loved one — become unable to express your health care preferences. It’s most important that you talk to your health care agent (the person you appoint to speak for you, should you be unable to speak for yourself) and your doctor about your wishes, but you also may want to share your desires with other family members. Finally, be sure to update people — and your forms — if your wishes change.

Talking to your health care agent

Before you appoint someone as your health care agent (or alternate agent), make sure that person understands your wishes and is willing to carry them out. If he or she objects to one of your decisions, you might want to think about picking someone else. A good way to organize your thoughts for this conversation is to fill out a generic living will and use it to explain what decisions you’ve made and why. Also discuss any religious beliefs that might impact your thinking on end-of-life matters and your general hopes for your medical care. It might be good to let other family members know about your decisions, too, so they don’t feel left out or surprised in case your agent does need to make decisions for you.

Don’t forget that no matter how hard you and your agent find this conversation, not having your wishes spelled out will create more stress in the long run. Watching a loved one get sick is one of life’s major stressors. Being responsible for making choices about the medical care of that person is difficult to begin with, and not knowing what choices the person would have made further increases stress. So talking about what kind of care you would want and putting those choices in writing are important not only for your peace of mind, but for your family’s as well.

Talking to your doctor

If a doctor disagrees with a patient’s wishes, he or she does not have to carry them out, but is obligated to find a doctor who will. To avoid this complication, make sure your doctor knows about — and is comfortable with — your decisions. Schedule an appointment specifically to go over your completed advance care directive, or tell the receptionist that you want extra time to discuss them during your next appointment.

In addition to the items covered in your directive — especially the kind of treatments you would want and how you would like to treat pain — make sure your doctor is aware of how much you would like to know about your condition should you become very ill. Some people want to know everything, while others would prefer only the basics. Also note how much information you want shared with your loved ones.

In addition, your doctor can be a great resource for questions about medical treatments that you’d like answered before you fill out your directive. He or she may also be able to tell you what medical problems you may face given your medical history.

Once you’ve completed your advance care directive, ask your doctor to keep copies in your medical file and to make a note in the file about the conversations you’ve had. Also periodically make sure he or she has the current contact information for your health care agent, if you have one.

Tips on being a good agent

Being asked to be someone’s health care agent is an honor — it means the person is saying, “I trust you with my life.” It’s also a huge responsibility. So before you say yes, make sure you feel comfortable carrying out the person’s wishes and that you don’t feel morally or religiously opposed to them. Once you have agreed to be someone’s agent, the following tips may make your job easier:

Be sure you know everything you can about your loved one’s wishes at the time you sign the health care proxy. And check in with him or her every now and then — especially after a change in health — to make sure those feelings haven’t changed.
If your loved one becomes sick, be sure the staff of the nursing home or hospital knows that you are the health care agent. Bring along a copy of the health care proxy.
Don’t be afraid to ask questions to make sure the health care workers are honoring your loved one’s wishes. Remind people of those wishes as needed.
Make sure you understand your loved one’s medical condition and the likely outcome. Some doctors may explain things using medical terms you aren’t familiar with. Don’t be afraid to ask them to rephrase something until you fully understand it. Also make sure you and the doctors are speaking the same language. For example, your loved one may define “recovery” as living without the use of life support, but it may mean something else to his or her doctors.
If you feel your loved one’s wishes are being ignored, talk to a hospital social worker, patient representative, chief of medicine, or the institution’s ethics committee or lawyer. As a health care agent, you are an advocate for someone who can’t advocate for himself or herself. Don’t be afraid to be pushy if need be.
Make sure you understand your rights and responsibilities. You can find more information on this in A Guide to Living Wills and Healthcare Proxies from Harvard Medical School.

FEATURED CONTENT:

Advance care directives
Health care proxy
Choosing an agent
Living will
Creating your health care proxy or living will

Considering medical procedures
Talking about your wishes
Forms: Health Care Proxy, Living Will Worksheet, Generic Living Will, Advance Care Directives Tracking Sheet
State-specific information

** Get your copy of A Guide to Living Wills and Health Care Proxies

A Guide to Living Wills and Health Care Proxies is a report designed to help you protect your rights. Although health care proxies and living wills are important forms to fill out, they’re not difficult to understand, and you don’t need a lawyer’s help. This report explains the process, gives you tips on how to talk about this difficult subject, and provides you with the actual forms and worksheets you need. Click here to read more or buy online.