Journal of Gerontological Nursing

LEGAL ISSUES 

Patient Self-Determination: Is Anyone Really Listening?

Kay Weiler, RN, MA, JD

Abstract

1 he Patient Self-Determination Act (PSDA) of 1990 was implemented in December 1991. Since then, nurses in all acute and long-term care facilities have become familiar with the legal responsibilities of health care facilities. These include providing the patient with written information about the available legal options for health care, how the facility assists in respecting the patient's rights, and the procedures to document whether the patient has executed a legal advance directive (Patient Self-Determination Act, 1990).

However, as the process of distributing information and documenting the presence of a living will or a durable power of attorneybecomes commonplace, the object of the law may be lost. The intent of the PSDA is to make all participants in the health care system aware of the patient's individual right to determine if he or she wants to provide advance directions or identify a legal substitute decision maker for treatment decisions (ie, a living will or a durable power of attorney for health care). All of the effort devoted to the development and implementation of the act was to help the patient exercise autonomy in health care treatment decisions.

Now, almost two years after the implementation of the act, multiple forms have been modified to document when the patient receives the mandatory written information and to indicate whether the patient has a living will or a durable power of attorney for health care. The organization of some medical records has been modified to provide a designated section for these legal documents.

All of these procedural steps have been implemented to assist the nurse in assessing and documenting the patient's desire to accept or reject specific health care treatment options. However, despite the procedural improvements, a serious question remains: "Is anyone really listening to the patient?"

Recently, a colleague who has become interested in the PSDA came to me and said in disgust, "No one is listening." Unfortunately, as she related the event, this seemed true; no one had listened to the patient or the family.

My colleague related the story of a mother of a good friend who had been diagnosed with retroperitoneal sarcoma. The surgeon told the family that an 11pound abdominal tumor had been totally removed during the surgery and that the patient could expect recovery with chemotherapy and radiation. The patient and her family expected her to have a full recovery. Four weeks after the surgery, the patient was readmitted with complaints of abdominal pain. Another large abdominal tumor (estimated to weigh 8 pounds) was found. Additionally, the patient had a large blood clot in the vena cava.

After receiving permission from the adult daughter who was designated as the power of attorney for health care, my colleague reviewed the patient record and tried to talk with the nursing staff about the patient's prognosis and nursing care. In response to questions from the family and my colleague, the nursing staff responded with apathy and indifference. One nurse was too busy to discuss the patient's care and replied, "I have to leave to pick up my child from day care." Another nurse on the unit refused to discuss the patient's care with the family or my colleague.

After reviewing the record, my colleague had an important but difficult discussion with the patient and the family. The unfortunate reality was that the patient was dying. Immediately after that difficult discussion, the surgeon made rounds and visited the patient. Initially he tried to gloss over the seriousness of the condition; however, when the patient's family pressed for specific information, the surgeon acknowledged that the tumor would quickly be fatal.

Within two weeks…

1 he Patient Self-Determination Act (PSDA) of 1990 was implemented in December 1991. Since then, nurses in all acute and long-term care facilities have become familiar with the legal responsibilities of health care facilities. These include providing the patient with written information about the available legal options for health care, how the facility assists in respecting the patient's rights, and the procedures to document whether the patient has executed a legal advance directive (Patient Self-Determination Act, 1990).

However, as the process of distributing information and documenting the presence of a living will or a durable power of attorneybecomes commonplace, the object of the law may be lost. The intent of the PSDA is to make all participants in the health care system aware of the patient's individual right to determine if he or she wants to provide advance directions or identify a legal substitute decision maker for treatment decisions (ie, a living will or a durable power of attorney for health care). All of the effort devoted to the development and implementation of the act was to help the patient exercise autonomy in health care treatment decisions.

Now, almost two years after the implementation of the act, multiple forms have been modified to document when the patient receives the mandatory written information and to indicate whether the patient has a living will or a durable power of attorney for health care. The organization of some medical records has been modified to provide a designated section for these legal documents.

All of these procedural steps have been implemented to assist the nurse in assessing and documenting the patient's desire to accept or reject specific health care treatment options. However, despite the procedural improvements, a serious question remains: "Is anyone really listening to the patient?"

Recently, a colleague who has become interested in the PSDA came to me and said in disgust, "No one is listening." Unfortunately, as she related the event, this seemed true; no one had listened to the patient or the family.

My colleague related the story of a mother of a good friend who had been diagnosed with retroperitoneal sarcoma. The surgeon told the family that an 11pound abdominal tumor had been totally removed during the surgery and that the patient could expect recovery with chemotherapy and radiation. The patient and her family expected her to have a full recovery. Four weeks after the surgery, the patient was readmitted with complaints of abdominal pain. Another large abdominal tumor (estimated to weigh 8 pounds) was found. Additionally, the patient had a large blood clot in the vena cava.

After receiving permission from the adult daughter who was designated as the power of attorney for health care, my colleague reviewed the patient record and tried to talk with the nursing staff about the patient's prognosis and nursing care. In response to questions from the family and my colleague, the nursing staff responded with apathy and indifference. One nurse was too busy to discuss the patient's care and replied, "I have to leave to pick up my child from day care." Another nurse on the unit refused to discuss the patient's care with the family or my colleague.

After reviewing the record, my colleague had an important but difficult discussion with the patient and the family. The unfortunate reality was that the patient was dying. Immediately after that difficult discussion, the surgeon made rounds and visited the patient. Initially he tried to gloss over the seriousness of the condition; however, when the patient's family pressed for specific information, the surgeon acknowledged that the tumor would quickly be fatal.

Within two weeks of learning that she was dying, the patient died. The questions my colleague and her friend asked were, "Why wouldn't the nurses listen to us and why wouldn't they talk to us?" The PSDA was enacted to provide patients with information about their health care treatment options. However, the spirit of the legislation becomes lost when the end result is an automatic process. If there is no thought or regard for the individual receiving the information and the important and difficult decisions being considered, the mandates from the legislation become ineffective paperwork.

Going through the motions is not enough. Asking questions and marking forms meet the requirements of the legislation. Without listening and caring, however, the process becomes meaningless - and no one benefits from the effort expended to draft and implement the legislation.

10.3928/0098-9134-19931001-11

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