How To Prepare for End of Life

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The ruling from the Florida Supreme Court regarding the Terri Schiavo case has focused much of America on crucial issues for end of life decisions. Perhaps the biggest news from the case, however, is the lack of preparation by most Americans when it comes to the end-of-life issues.

A End of Life survey of AARP members 50 years of age and over noted that a little over one-half (55%) of respondents have an Advance Directive, such as a living will or a health care power of attorney. While 60% have spoken with family about end of life wishes, only 23% have spoken with a lawyer.

A National Hospice Foundation 1999 public opinion survey of people 45 years of age and older noted that Americans are more willing to talk about safe sex and drugs with their children than to discuss end-of-life-care with their parents. Also of note: Only 24% of Americans put into writing how they want to be cared for at the end-of-life.

The preparation of Advance Directives – living wills, medical powers of attorney and written health care proxies – is key to avoiding emotional turmoils and legal battles later. There is nothing more heartwrenching that watching a family battle advocacy groups, the courts, and the media to determine their loved one’s unstated wishes.

Elder law attorneys specialize in issues that address the entire life spectrum. This expertise allows them to work effectively with clients to identify and provide for the medical, legal and family circumstances and issues inherent in preparing for the end-of-life.

Advance Directives include three primary documents:
1. A Living Will is a statement of how an individual would like to be treated in the event that he or she is unable to make decisions regarding the use of life sustaining medical treatment. This document allows the individual to determine the use (or non-use) of life sustaining measures and under what circumstances they may or may not be applied.

2. A Health Care Proxy is the voice of the living will, authorizing one or more individuals to communicate a client’s wishes regarding end-of-life treatment. In its basic form, depending on state law, it does not provide any additional authority. In some states “proxy” is synonymous with health care power of attorney or is the word used when there is no self-selected surrogate.

3. A Health Care Power of Attorney is the teeth of the living will. It not only authorizes an individual to communicate a client’s medical instructions, but can provide a host of other powers in the appointment of an Agent who can: (1) hire and discharge medical personnel and medical institutions, (2) access and provide details regarding a client’s medical history, and (3) consent to a “Do Not Resuscitate” (DNR) Order for a client.

One Size Fits All?
The National Academy of Elder Law Attorneys (NAELA) discourages the use of standard forms that presume uniformity of thinking. Many client provisions require individual focus and discussion. Standard forms simply do not address many important client circumstances or issues. Some clients have a pre-existing condition that may need to be addressed, or a family member who may be known to object to the client’s wishes, or a specific treatment concern. When NAELA attorneys prepare documents for clients, a host of questions are first asked, including…

1. Who will serve as the Agent for Health Care? Who will serve as the alternate? If co-agents are appointed, must they act together or may they act independently?

2. Should the Agent for Health Care be required to be present when the client is weak/medicated, but conscious enough to make a decision?

3. Should blood transfusions be limited to those provided by family members and/or friends?

4. Are you willing to accept experimental treatment? What about the use artificial nutrition and hydration?

5. Should the Agent for Health Care be required to push home care as the first or only alternative?

6. Do you have a preference to include the entry of a physician’s “Do Not Resuscitate” Order to take effect either immediately or at some defined point in the future?

7. Do you want treatment refused if it means becoming completely dependent upon others? What if it means having to suffer chronic pain or taking pain medication that will reduce or eliminate the ability to

8. Do you want access to maximum pain control even if the medication has the potential to be addictive or the dosage could be lethal?

9. Do you want to refuse treatment for reversible secondary conditions (e.g., pneumonia, infection) when the treatment would be of low burden (e.g. antibiotics) and the consequence of non-treatment might be an earlier death than if the condition were treated?

10. Do you want to refuse chemotherapy if death is imminent?

11. Do you want to accept euthanasia if permitted by law?

12. Would you like to make anatomical gifts or give the agent the power and authority to make these life saving gifts?

13. Do you have any individual wishes regarding healthcare (e.g. music, specific health facility, religious limitations etc.)?

14. Would you like music played if you cannot communicate? Which music?

15. Should the health care provider’s or specific family member’s ability be limited to intervene in medical decisions or to petition the court for intervention?

16. What do you wish be done with your remains?

Choosing an Agent or Surrogate for Health Care Decisions
The best documents are meaningless if there is no advocate or if the terms are not enforced. It follows that the choice of agent or surrogate is critical. An elder law attorney can assist clients in making the right choice. The agent should be an individual who is, or can learn to be, comfortable with medical terminology in a health care setting. The agent must be sufficiently encouraged to be persistent and strong so that recalcitrant health care providers do not interfere with the decision-making rights of the patient/client. Ideally, the agent reviews the document, discusses its terms with the individual and agrees to accept this responsibility.

In Summary
At press time, the Governor of Florida is considering appealing the Florida Supreme Court decision in the Schiavo case. An appeal of equal importance is one to all Americans – from eighteen to one hundred and eighteen – to get their affairs in order and avoid a potential legal battle. Every individual has a right to determine how they live out their last days and owes it to their family to express those wishes. Abdication of these responsibilities only leads to anguish as families are left to sort through the emotional, legal, moral, and social ramifications at a time when they are most vulnerable. Taking the step to contact an elder law attorney will allow an individual the opportunity to identify and remedy these issues before they become a problem for the ones we love.

For more information about elder law attorneys and the National Academy of Elder Law Attorneys, visit Established in 1987, NAELA provides a resource of information, education, networking and assistance to those who deal with the many specialized issues involved with legal services to the elderly and people with special needs.

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