Advance Care Planning Explained

Should you become unable to speak for yourself, making your preferences known now is what is called Advance planning.
It is very easy to procrastinate about planning for the end of life decisions. Taking the time to learn about end-of-life care options and services before a health crisis and putting your wishes down in legal documents, are necessary to prevent putting unnecessary burden on your loved ones should you not be around or unable to make those decisions.
Some of the issues to think about are:

• How to address the "ifs" and ambiguities of living with chronic illness.
• The role of the family, their interests, well-being, their authority to revise advance care planning documents.
• Your views about such medical issues such as CPR (cardiopulmonary resuscitation), DNR ("do not resuscitate"), respirators, pain management, hydration issues, artificial nutrition, blood transfusions, organ and tissue donation and medical device donation. Other topics to consider include hospital transfers, placement issues (including home), and how assets and benefits are to be used.
• Your preferences regarding funeral and memorial services as well as final disposition plans whether cremation or burial.

Establishing Your Preferences

You can also give instructions orally by discussing your treatment wishes with your doctor, family members or others close to you. A safer method is to put things down in writing. In particular, using a legal instrument in your area should be the route of choice.

In the United States of America, this is usually in a document known as the Advance directives. Some regions use an alternative forms such as living will. In a living will or advance directives, you put down in writing, instructions to health care providers on the treatment preferences should you be faced with an end of life situation.

You should understand that general instructions about refusing treatment, even if written down, may not be effective. Your instructions must clearly cover the treatment decisions that must be made. For example, if you just write down that you do not want the "heroic measures," the instructions may not be specific enough. You should say the kind of treatment that you do not want such as a respirator or chemotherapy, and describe the medical condition when you would refuse the treatment, such as when you are terminally ill or permanently unconscious with no hope of recovering.

Designating a person (health care proxy) to make your health care decisions should you not be able to do so can also be included as part of the advance directives. In some regions, the health care proxy is established as a health care power of attorney or durable power of attorney.

When you have a health care proxy, it is important to address whose instructions take precedence if there is a conflict between your instructions and those of the health care proxy. You should also document, the limit of the authority that you are giving the proxy.

Choosing a Health Care Proxy

It is important that you choose wisely who should make those import decisions for you when you cannot make them. In most regions, there are rules about are excluded from being your health care proxy.
In most regions of the United States of America, the following cannot be your health care proxy:

• Anyone under the age of 18.
• Your health care provider, including owners and employees of a health or residential or community care facility serving you unless this person is your spouse or close relative.

Not everyone can be a good health care proxy for you. Ideally you want someone who will be available to make the decisions, are willing to make such decisions, able to make such decisions and able to advocate on your behalf.

Some of the qualifications to look for in a suitable proxy are:

1. Meets the legal criteria in your region for acting as proxy or representative.
2. Someone you can trust with your life.
3. Knows you well and understands what’s important to you.
4. Would be willing to speak on your behalf.
5. Would be able to act on your wishes and separate his/her own feelings from yours.
6. Would be able to handle conflicting opinions between family members, friends, and medical personnel.
7. Can be a strong advocate in the face of an unresponsive doctor or institution.
8. Will likely be available long into the future
9. Lives close by or could travel to be at your side if needed.
10. Will talk with you now about sensitive issues and will listen to your wishes.

State-specific advance directives, brochures about advance directives and other information about advance care planning can be found at www.nhpco.org.

Making your decision known

You need to talk to your loved ones about your decisions. If you have chosen a health care proxy, you have to let the person know and accept the responsibility. It is also important that the proxy understands what the responsibility of a health care proxy are and knows your preferences on health care issues.

Resources

1. Charles Meyer, A Good Death: Challenges Choices and Care Options, (1998).
   - Down-to-earth, lay-language explanation of the implications of end-of-life care decisions from a religious and spiritual perspective. A 64-page paperback available in many bookstores.
2. The Center for Practical Bioethics, Caring Conversations Workbook.
   - A comprehensive do-it-yourself workbook on planning for end-of-life care.
3. Joanne Lynn, M.D., and Joan Harrold, M.D., Handbook for Mortals: Guidance for People Facing Serious Illness, Oxford University Press, 1999, available online at the website Americans for Better Care of the Dying.
   - A most comprehensive and readable 242-page guide to dealing with serious, eventually fatal illness.
4. Hank Dunn, Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness, A&A Publishers, Inc.
   - A concise booklet on end-of-life decisions concerning resuscitation, food and fluids, hospitalization, and cure versus comfort care.

Related Articles

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• Important Documents to have in a Medical Emergency
• Understanding Advance Directives, Living Wills and Powers of Attorney
• Conservatorship or Guardianship
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