Planning Your Medical Future

Several types of legal documents are available to express your medical wishes if you become unable to make decisions. Taking time now to plan your medical future will give you a greater sense of security and peace of mind throughout survivorship.

Planning Your Medical Future: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources

This information was adapted, with permission from the National Coalition for Cancer Survivorship, from National Coalition for Cancer Survivorship. A Cancer Survivor's Almanac: Charting Your Journey, Third Edition. Ed. Barbara Hoffman. Hoboken: John Wiley and Sons, 2004. For more information or to order a copy, visit NCCS at www.canceradvocacy.org.

Most people want to make their own decisions about their medical care. They do not want doctors to decide for them what medical care to give or withhold. However, a majority of adults have not done planning for their medical future. In other words, they have not specified medical preferences in writing. This can leave loved ones to struggle with medical providers and among themselves to make critical health care choices during a stressful time.

A survivor may feel limited in the amount of control that is had during the course of cancer. However, you can affect how decisions about your own medical care will be made if there is ever a time when you are not able to decide for yourself. Some survivors may feel that talking with loved ones about health care choices is difficult. However, planning for your medical future can assure loved ones that these decisions are being made according to your wishes, especially at the end of life.

Why use legal documents to plan for future medical care?

Many cancer patients continue to make the decisions about their health care during treatment. However, medications, advanced cancer, or a new medical condition may leave some unable to express health care preferences for a time. Because of this possibility, it is important to have your wishes legally documented in advance. Advance health directives are signed legal documents that ensure important medical decisions are made according to the wishes of the patient.

Health care during cancer can include making choices from a variety of complex medical options. One of the most difficult types of decisions is the kind of care to be given when a patient in an advanced stage of illness. Most doctors are trained to consult with family members and provide all reasonable life-sustaining treatment. However, you may want to have your own specific preferences honored during times that major medical decisions must be made. If there are no advance health directives, this may or may not be in line with your preferences.

What are advance health directives?

Advance health directives inform loved ones and health care providers of your choices for future medical care. This includes whether you want to stop, or even start, life-sustaining treatment. A properly signed and witnessed health directive acts as a contract between you and your doctor. The doctor must honor your instructions or transfer you to the care of another doctor who will follow your directive.

The two most recognized types of advance health directives are a durable power of attorney for health care and a living will. Every state has laws recognizing advance health directives, but they differ from state to state. Find out the laws about advance health directives in your state.

• Durable power of attorney

A durable power of attorney for health care allows you to appoint someone to speak for you. The appointed person is your agent or proxy. This legal arrangement allows you to transfer your legal right to make health decisions to that person. Durable means that your agent can make decisions for you only when you are unable to do so.

You can appoint any adult as your power of attorney for health care. Your agent does not need to be an attorney. In fact, most people choose a close family member or friend. Make sure the person you choose knows you well and is willing to make decisions that will follow your wishes.

Include the following steps as you begin to create a durable power of attorney:

1. Include specific information in the durable power of attorney document.

   Preparing a durable power of attorney for health care is the best way to ensure that you receive the medical care that you want. You can specify any type of medical care. Doctors can prolong life in many ways including with surgery, medicines, respirators, tube feeding, intravenous (IV) fluids and kidney dialysis. The more specific you are about your wishes in this document, the more likely you will receive the care that you would have chosen.

   Your durable power of attorney document should give detailed instructions concerning:

   • Whether and under what conditions you should receive life-sustaining treatment
   • Whether and under what conditions you should have a do not resuscitate (DNR) order
   • Whether and under what conditions you should receive pain medication, artificial nutrition, hydration, or surgery
   • Your preference for where you want to receive treatments such as in the hospital, nursing home, hospice facility or at home
   • General language that covers unanticipated events in your health, finances or available medical treatment
   • Contact information for your agent(s) including full names, addresses (mailing and email) and phone numbers
2. Avoid using vague words in a durable power of attorney document.

   Words such as hopeless, extreme and heroic may be interpreted differently by different people. Also, be specific when using words such as terminal or irreversible. For example, you may consider your cancer terminal if your doctor tells you that you are unlikely to live for more than two years. However, your doctor may consider your cancer terminal only when you are within hours or days of death.

3. Specify the types of circumstances in which doctors are to withhold certain types of care or to stop treatment.

   The following are examples of statements that may be used to define situations:

   • When the doctors agree that treatment would improve neither the quality nor length of life
   • When the doctors believe that death is likely within a certain time (such as number of days, weeks or months)
   • When all traditional medical treatment has been exhausted without success
4. Clearly specify the types of treatment that are wanted and not wanted.

   The following are examples of the types of treatment you may or may not want:

   • Artificial nutrition and hydration methods such as being fed through a tube that is placed in the stomach, upper intestine or vein
   • Mechanical ventilation to help with breathing

• Living Will

A living will simply expresses your preferences. It is not as effective as a durable power of attorney for health. Keep in mind that a doctor or family member may struggle with medical, legal, ethical and personal values that conflict with your living will. They may not want to lose you even though you have indicated that you want to die with dignity.

On the other hand, a durable power of attorney for health care gives legal authority to the agent you know and trust to act in your place. Your agent can serve as your advocate to ensure that your wishes are carried out.

Some of the preferences that may be covered in a living will include artificial feeding and the use of a respirator if a patient is unable to breathe on his or her own. Similar to your right to refuse medical treatment, you have the right to state in advance that you do not want to be kept alive by certain procedures.

What is the best way to have a say in future medical decisions?

The best way to influence future medical decisions is to use health care directives that are recognized by the state in which you live. Discuss your choices with your loved ones and doctors to be certain that they will honor your wishes if that time comes.

Most states recognize both a durable power of attorney for health care and a living will. Laws can vary widely from state to state as to when and how you may express future medical decisions, how old you must be, and how the law is enforced.

To ensure that your doctors and family respect your wishes, provide written "clear and convincing evidence" of your desires in an advance health directive document. Clear and convincing evidence is the level of proof a court requires to accept an incapacitated patient's wishes.

If you are writing or revising a will, ask your attorney to prepare a durable power of attorney for health care and a living will as part of your financial and health care planning. However, you do not have to hire an attorney to prepare a durable power of attorney for health care or a living will. Most states provide a form to complete and have signed by witnesses.

When should advance health care directives be prepared?

Advance health directives are a good idea for every adult. If you do not already have them prepared, create them as soon as you can after your diagnosis. This documents your wishes before you begin treatment.

The federal Patient Self-Determination Act requires all facilities that receive Medicare or Medicaid, such as hospitals and nursing homes, discuss health care directives with newly admitted patients. The law also requires that the health care facility records your health care directives as part of your medical records.

How can an agent or proxy be chosen?

An agent or proxy is someone that you trust and are confident will be willing and able to carry out your wishes if you become unable to do so yourself. You may wish to appoint two proxies, specifying the second to make decisions if the first is unable to do so.

Critical medical decisions are very difficult such as withdrawing life support equipment. They should be entrusted only to those loved ones or friends who would make the same decisions that you would make about your treatment.

To keep your advance health directive current, review it regularly. Write your initials and the date you reviewed it on the document. If you change your mind about an instruction, write in your new instruction, initial, and date it. If you decide you no longer want to use the directive, destroy it and all copies of the document.

This document was produced in collaboration with:

Barbara Hoffman, JD

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Planning Your Medical Future: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

• Write down information to share with loved ones.

  Making decisions about planning wills and other financial documents can be upsetting for survivors and their families. Having a list of items to discuss can be helpful to you and your loved ones. Organize information about your family, medical wishes, finances and estate planning in advance.

• Get copies of advance directive forms.

  You can obtain a copy of an advance directive form from an attorney, library, hospital or organization that advocates for people facing end-of-life decisions. Your state or local bar association can help you locate an attorney with experience in drafting an advance health directive.

  The Last Acts Partnership is a national, nonprofit organization devoted to raising consumer expectations for excellent end-of-life care and increasing demand for such care. It provides information on advance health directives including information about state laws and model forms.

  Last Acts Partnership
  1-800-989-9455
  www.lastactspartnership.org

  You also can identify your own end-of-life issues by using Five Wishes, an easy-to-use legal document offered by Aging with Dignity, a national non-profit organization. It was developed to help plan for end-of-life care by identifying which interventions are wanted.

  There is a small fee for this resource. It may help you to identify and define:

  • The person you want to make care decisions for you when you cannot
  • The kind of medical treatment you want or do not want
  • How comfortable you want to be
  • How you want people to treat you
  • What you want your loved ones to know
  
  

  Five Wishes meets the legal requirements under the health decision laws of most states and the District of Columbia. Even in states where it is not legally recognized, it can serve as a guide to help you discuss your end-of-life choices with your family and doctor. This resource is available in English, Spanish and Vietnamese from:

  Aging with Dignity
  P.O. Box 1661
  Tallahassee, FL 32303-1661
  1-850-681-2010
  www.agingwithdignity.org

• Give copies of your advance health care directive to the right people.

  Give a copy of your health care directives to the people who will be involved in your medical care. Your doctor should have a copy to keep in your medical file. Discuss your decision with the doctor in advance. Ask is he or she is willing to continue to be your advocate even if your care is turned over to another doctor.

  Keep another copy with your personal papers, but not in a bank safety deposit box. That way, others can find it if necessary. You can also carry a card in your wallet that specifies that you have a health care directive and indicates where it can be found.

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Planning Your Medical Future: Additional Resources

The resources listed below provide more detailed information and support services to help you with planning your medical future. Please read the Detailed Information and Suggestions document for more information and questions to ask.

American Cancer Society (ACS)
www.cancer.org

Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf or hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

LIVESTRONG Navigation Services
LIVESTRONG.org/Get-Help

Online: Complete an intake form through the LIVESTRONG website.
Phone: 1.855.220.7777 (English and Spanish)
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG has partnered with several organizations including Imerman Angels, Navigate Cancer Foundation, Patient Advocate Foundation and EmergingMed.

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