Clin. Cardiol. Vol. 23 (Suppl. II), II-26II-28 (2000)
William Leonard, Ph.D.
University of South Florida, Tampa, Florida, USA
Background
In 1998, after years of discussion, the Florida Chapter of the American College of Cardiology (FCACC) launched Project GRACE for the purpose of developing Guidelines for Resuscitation And Care near the End-of life for our society. It is hoped that these guidelines will be implemented throughout the state of Florida and possibly eventually even throughout the nation.
The guidelines evolved as a result of the dedicated efforts of volunteers organized into Task Forces, who reviewed the appropriate literature, consulted with academic and community leaders, and, after much discussion, consolidated their opinions and recommendations in four Task Forces on major subject-matter areas. These are: Medical Futility, Advance Care Planning, Palliative Care, and Education/Implementation.
The members of Task Force I emphasized that despite difficulties of predicting the time of death or its certainty beyond doubt, medical knowledge now exists that permits prediction of a fatal outcome or medical futility (where life is functionally meaningless) with a high degree of probability. The possibility exists that young people may be involved in accidents or catastrophic illnesses that impair their ability to make rational decisions about their health. And since people are living longer, they are likely to confront health decline and situations in which additional health care may be superfluous or undesirable, or where they are physically or mentally incompetent to make a health care decision. Hence, all individuals should be advised to make legal preparation for end-of-life situations through an Advance Care Plan (ACP)/Living Will (LW). Further, since the individual may at some future date lack the physical or mental ability to make a rational decision, he or she should select in advance a surrogate empowered to act in the individual's best interest in such a situation. Such preparation can protect the individual from undesired and futile therapy and can relieve his or her family from the difficulties of making decisions about limiting or withdrawing care.
Elderly patients often choose to forego aggressive interventions, reasoning that they have lived a long life, have accomplished their goals, have come to terms with death which, although not imminent, may be around the corner, and prefer to make a graceful exit. Such individuals should have the right to request any or all limits to cardiopulmonary resuscitation (CPR) and life support measures, and establish a Do Not Attempt Resuscitation (DNAR) order. Furthermore, they may prefer nonaggressive management for such illnesses as heart attacks, cancer, and even pneumonia. There is an urgent need to develop legal and social mechanisms for respecting and fulfilling end-of-life choices of these individuals.
Each person is aware of cases where patients have been kept alive for days or weeks when death was certain. When the patient's prognosis is poor and the expected outcome from any medical treatment is likely to be useless or even harmful to the individual, medical futility applies. The physician will use the patient's diagnoses, together with knowledge of the severity of the illness and other individual patient characteristics, to assess the situation and answer three questions:
If the answers to these questions point to a medically futile situation, the patient should be managed accordingly.
Task Force II focused on the form and content of the ideal ACP or LW. Although a number of forms are available, it was agreed that none is ideal and that an effort should be made to develop an ideal form. Consideration should be given in that form by the patient to making an anatomic gift of one or more organs after death.
Task Force III noted that Palliative Care is compassionate care that provides psychosocial support of a person with an incurable disease or significant functional limitations. Illness, as well as long-term care and death, are family affairs. Each family cares for their identified patient in a way indicative of their values and beliefs; and the manner in which each person is cared for will influence the cooperation of the family and ultimately how the family grieves and is able to continue living. Health care providers must recognize diversity in families with regard to ethics, religion, cultural norms, social support systems, financial means, and health care expectations, along with other variables.
Florida's varied population offers a challenge to appropriate and even-handed health care discussions. Florida is a state of transients, of tourists, of snow-bunnies here for half a year, singles such as students, divorces/divorcees, single parents, the widowed, and retirees beginning a new lifestyle. The climate and relatively low taxes attract migrants from northern states and Europe, while geography and a good economy invite immigrants from the Caribbean and Latin America. The result is a multicultural population of diverse ages, economic status, educational levels, marital status, religion, race, and social attitudes.
An example of diversity appears in statistics of deaths each year in Florida's counties, with counties that attract elderly people reporting many more deaths per 1,000 residents. For 1997, even among adjoining counties in the Gulf Coast of Florida, large differences occurred:
County Deaths per 1,000 population Hillsborough 8.5 Pinellas 14.2 Polk 10.5 Pasco 15.7 Hernando 15.2 Average for Florida 10.4
It is evident that to improve palliative care, some areas of the State will require more educational programs than others. Furthermore, the diversity of the State's population indicates that no single standardized program will meet the needs of all residents.
It is a truism to state that the traditional family in America no longer exists. Families move many times and members of many nuclear families live many miles apart. Care must frequently be delivered to homosexual partners, common-law arrangements, single-parent households, young singles, the widowed, the aged who have never married, and the homeless. A frequent occurrence in Florida is the couple who moved from a distance to Florida to retire, then within a year one partner dies leaving a new widow or widower with little connection to the community. A recent survey of the United States reported that over 55% of the population live alone.
It is often difficult for the caregiver to identify the person who serves as part of the family support system. Often the patient who is chronically ill considers the closest neighbor, friend, or nursing caregiver as more of a family than his or her own blood relatives.
Communications with the physician may also be strained where family members lack medical knowledge, do not understand the situation(s), and do not know what questions to ask. They may call the physician at inopportune times and find the response unsatisfactory.
Unfortunately, some physicians lack the knowledge of how to communicate openly with the patient and family. In other cases, they may follow the tradition of guarding the privacy of medical information. Physicians and other healthcare personnel need to communicate what palliative care means and explain the efforts being made to provide comfort and pain relief for the patient. Acceptance of the person identified as caregiver by the patient and family is crucial. The role carries responsibilities, for the caregiver is an influential decision-maker. Although actions taken by the caregiver may not always be approved by the family, good communications are essential.
Task Force III concluded that it was essential to:
Conclusions
It is obvious that the problems discussed earlier require changes in practice, attitudes, and ways of communicating that can be achieved only through additional and improved education. Not only do new courses on end-of-life treatment and palliative care need to be provided and required for physicians and health care providers, but public education through a variety of means needs to be extended. Furthermore, the education of students in medical and other health care schools must emphasize the importance of recognizing medical futility and the importance of palliative and patient participation in their care through ACPs.
We believe, that as a result of the input of all participants of Project GRACE, the following goals should be sought by all wishing to assist our citizens to attain a graceful exit.
Acknowledgment
The author expresses his appreciation to Dr. John Mortimer, Ms. Reba Cook, and Dr. Henry D. McIntosh for their valuable contribution.