Stanford University Geriatric Education Resource Center  

HBV18: Advance Directives and End-of-Life Discussions

A Manual for Instructors

Table of Contents.

1. Background Material 4
2. Important Terms, Concepts, and Treatment Options 4
3. Medical Treatment Options 5
4. Understanding Our Personal Feelings About Death 6
5. Beginning the Discussion and Understanding Our Patients' Values 7
6. Communicating with Families and Surrogates 8
7. Clarifying Unclear Statements 9
8. Documenting the Discussion 10
9. References 10

This manual is meant to be used in conjunction with an accompanying videotape, but can serve as stand-alone text providing background material useful to instructors, with specific teaching tools included.

Physicians caring for older persons will often participate in end of life care, necessitating effective communication skills, proficiency in predicting prognosis, and compassion. We must try to understand our patients' values and goals when discussing the wide array of treatment options available. When we develop treatment plans consistent with those values, often difficult decisions about life prolonging therapies will be clarified. Since our personal feelings about death and dying will frame our discussion we should understand and be cognizant of how our personal feelings surround these issues.

During most of our medical education, very little training in communication about end of life issues is emphasized. There is infrequent exposure to role models having these types of discussions and there is even less evidence that graduate medical residents are ever observed and given feedback when having end of life discussions with patients. Several studies have demonstrated that medical residents lack skills in this area. Given this lack of formal education it is not surprising that practicing physicians also lack skills when communicating with patients about end of life decisions. Consistent evidence demonstrates that this lack of expertise in communication often leads to unwanted, harmful and/or ineffective care. The SUPPORT studies are the largest series of research projects to have looked at end of life care. These studies have documented that despite having a very poor prognosis many people die in hospitals with considerable pain, suffering and with invasive medical interventions. The advance care directives of the patients in the SUPPORT study were often not addressed or acknowledged. Moreover, interventions to facilitate communication in this study failed to improve the poor outcomes. In fact, most interventions to improve care at the end of life have been ineffective.

Advance care directives represent one means for patients to express the type of care that they would desire should they lose the capacity to participate in their medical decisions. Lack of specificity and an inability to predict what one might want in the future often limit the usefulness of written directives in clinical practice. However, understanding what patients value in life and under what circumstances life might not be worth living, can be very useful when deciding on treatments in patients who lose capacity for decision making.

We believe that a failure to elicit patient values is at the heart of poor physician performance in this area.

The purpose of this manual is to provide tools for teachers to utilize when instructing medical residents or practicing physicians about conducting end of life discussions with their patients.
The manual and accompanying videotape will:
  1. Define important terms and concepts.
  2. Discuss what we know about medical outcomes of various treatment options.
  3. Demonstrate how we elicit patient values and goals and how they relate to end of life decisions.

An individual's right to control his/her own body is firmly rooted in our country's culture. The doctrine of informed consent enforces this right of bodily control, and allows informed refusal of therapies and interventions. A person with capacity has the right to refuse any therapy. The physician can, and should provide guidance, but the ultimate choice belongs to the patient. This emphasis on patient autonomy has evolved over the years from a system of paternalism. When one loses capacity, the right to refuse remains intact as represented by the surrogate decision maker. There is no ethical or legal distinction between withdrawing or withholding therapy, though it may be more difficult psychologically to withdraw a treatment. No physician, acting in good faith to limit therapies, based on a once-competent patient's previous wishes, has ever been found guilty of malpractice.

Competence and Capacity
Competence is a legal determination regarding a person's ability to make decisions, as decided by a judge. Capacity is a more specific concept relating to a person's ability to make a particular decision. For example, a man with mild dementia may not be able manage his finances but may still have the capacity to decide whether or not he wants to have a medical procedure performed.

The determination of capacity is best evaluated by the patient's physician and consists of a commonsense assessment of the patient's ability to understand his present situation and the important elements in a treatment decision. It is not necessary to have a psychiatrist make this determination. A good test of capacity is to have the patient repeat back, in his own words, his medical condition and the risks and benefits of a given treatment. When the decision in question is one that involves the forgoing of life sustaining therapies a second physician must also make a determination of incapacity.

Health Care Proxy (HCP)
The HCP is a document that allows a person to designate a surrogate decision maker, called a health care agent (HCA), to represent his treatment wishes should he lose capacity for making medical decisions. The HCP carries the weight of the law in several states, and it usually is honored in others. The document must be signed in the presence of two witnesses, and does not require the participation of a lawyer.

Living Wills and Durable Power of Attorney (for health care decisions)
The health care proxy laws are meant to make these documents unnecessary. However, living wills can provide the basis of foregoing life-sustaining treatment if the instructions qualify as clear and convincing evidence of what the patient would want. Under Durable Power of Attorney law, activities that could be delegated are usually business and financial in nature, and not health care decisions. In practice, consent of family is generally accepted without statute authority.

User Comments

I liked the explanation of terms and background information provided, also the cases and role-plays.

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