End of Life Planning

End of Life Planning

Be aware that advance directives are but one piece of end-of-life planning. The other elements should include a will or trust document to pass on property, a durable power of attorney for financial affairs, and funeral and burial plans. While each of these is unique and has its own set of issues, these elements are interrelated and should not be completed in isolation. For example, a number of authorities recommend that the same individual who is given power of attorney for financial affairs should also serve as power of attorney for health care under an advance directive. In the absence of a durable power of attorney for health care, some states list who the decision-maker is. (Gay and lesbian couple, in particular, need to know their state’s laws in this area.)

Health care decisions may have financial implications and vice versa. Both are important, and some matters may require legal advice.

Background: Impact of Medical Technology

Medical technology surpassed our society’s ability to deal with it.” Medical technology has, indeed, brought miraculous advances in treating illness and prolonging life. It also has transformed the nation’s demographics, established a new legal standard for death, made chronic diseases the primary cause of death, and introduced a state of uncertainty when treatments for such ailments prolong dying with no hope for a cure.

At the beginning of the last century, 70 percent of those dying were under the age of 65 (Bern-Klug, 2004). Most people did not survive to old age; life expectancy averaged only 47.3 years (CDC, 2003). Both high birth and high mortality rates kept the nation’s population young. They died from injuries, childbirth, or a sudden illness that could have been caused by any number of infectious diseases. Bacterial infections such as pneumonia were a major cause of death and remained so until the middle of 20th century (Dunn, 2001). With a youthful population, dying young meant that chronic diseases were uncommon. A patient normally recovered or passed away quickly.

One hundred years later, most people now live to old age. Actuarial charts indicate that a boy child born today will live well past age 70, and a girl child will live until almost age 80 (Census Bureau, n.d.). At this time, the fastest growing segment of the nation’s population is the 80-plus group. In 2000, 75 percent of those who died were 65 years or older. One-fourth of those dying were 85 years or older (Bern-Klug, 2004). While life expectancy in his county is several years younger than that in Japan and some European countries, the aging of the population is unprecedented in human history.

Medical advances contributed significantly to the aging of the American population. Pharmacology and public health all but eliminated the longtime scourges or cholera, typhus, and yellow fever. Antibiotics knocked pneumonia off the top of the list of primary causes of death (Dunn, 2001). And lives were saved or prolonged through the arrival of new technologies, equipment, and treatments, including:

  • Ventilators to provide artificial respiration
  • Heart and lung machines
  • Feeding tubes
  • Defibrillators to restart a heart
  • Diagnostic tools such as magnetic resonance imaging (MRI) and computer assisted topography (CAT scans)
  • Accident scene treatment by EMC technicians

A persistent vegetative state was not even mentioned in medical literature until the 1950s, when heart and lung machines (and later, ventilators) cam into widespread use (Linder, 1995).

These same advances have also rewritten the legal definition of what constitutes death. For generations, state laws defined death as the termination of a heartbeat and breathing. If the heart stopped beating, the other organs, including the brain, would quickly stop and the individual would be declared dead. Medical technology changed that. Heart and lung machines, for example, can keep a body alive even without any upper or lower brain activity. Beginning in 1983, states began approving an expanded definition of death include a new criterion, brain function. The Uniform Determination of Death Act, the model law adopted by many but not all states, now defines death as the “irreversible cessation of circulator and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem” (Linder, 1995). Some have argued that the whole-brain standard is too expansive. They recommend instead that death be based on the cessation of the higher brain, or the absence of a functioning cerebral cortex (Linder).

These days, instead of accidents and infections, the major causes or the approximate 2.5 million American deaths each year (Census Bureau, n.d.) are heart disease and circulatory problems (accounting for one-third of all deaths) and cancer (one-fourth of all deaths) (Bern-Klug, 2004). Both are chronic diseases, primarily affecting the older population, and with each, it is increasingly difficult to know when the end-of-life stage begins for each patient. For example, with heart disease, a heart attack (infarct) make be an immediate killer, but many individuals who suffer one may slowly decline for years before the heart fails (Lynn & Harrold, 1999). Medical prognoses projecting end of life with heart disease are frequently in error (Bern-Klug, 2004). Cancer is more predictable than heart disease, but with chemotherapy, radiation, and other treatment, medical technology now prolongs the lives of many seniors by months or years. Other common chronic illnesses cited as major causes of death are: lung ailments (emphysema and chronic bronchitis); kidney disease; liver failure; and dementia (Alzheimer’s disease and strokes) (Lynn & Harrold, 1999). It is common for many older people to suffer from multiple chronic illnesses, “making them live in a state of vulnerable frailty, somewhere between living and dying” (Bern-Klug).

Widespread Support for End-of-Life Planning

While the majority of Americans do not make end-of-life plans, an estimated 18 percent do preplan and prepare advance directives. For example, in March 1994, former President Nixon died of a stroke at age 81 (Marck, 2004). He was treated at the New York Hospital – Cornell Medical Center, the same institution then caring for the former first lady, Jacqueline Kennedy Onassis, age 64 (McFadden, 1994). She was diagnosed in January 1994 with a form of cancer that attacked her lymphatic system. Both patients completed advance directives indicating that they did not want their lives prolonged with medical treatments if their physicians diagnosed them as terminal. Hospital doctors and health care workers honored these directives (King, 1996). Nixon died in the hospital. Oasis, after chemotherapy and other treatments failed to arrest her cancer, returned home in April to die among family and friends. She died one month later.

There is widespread support for conducting advance planning. AARP, The Robert Wood Johnson Foundation, the Open Society Institute’s Project Death in America, Area Agencies on Aging, hospitals, and many others are all promoting end-of-life planning as part of their activities. Professionals – including the American Medical Association and American Bar Association – and many clergy recommend that every adult, and particularly older Americans, complete an advance directive. Finally, federal law (Patient Self Determination Act, 1990) indirectly encourages seniors to complete their own documents by requiring hospitals and nursing homes participating in the Medicare and Medicaid programs (virtually every health care institution) to inform patients of their right to complete an advance directive.

Research indicates that the majority of those completing advance directives tend to be white women wit higher levels of education and income. In a study of about 400 older adults in Charlotte County, Florida, researchers concluded that seven factors characterized the older adults living in the country who completed an advance directive (Rosnick & Reynolds, 2003). Those completing an advance directive were likely to:

  • Be over age 85
  • Be more open to different experiences
  • To have a higher income
  • Take more prescription medicines
  • Have a higher quality of life
  • Have lived through a negative life event
  • Have a sense of controlling their destiny.

In a separate study of 200 older persons from four ethnic groups, researchers found significant cultural differences regarding end-of-life practices among the different groups. Almost 60 percent of the Korean Americans and 45 percent of the Mexican Americans studied believe that the family, not a proxy, should be the primary decision-maker concerning medical treatments. Only 24 percent of the African Americans surveyed and 20 percent of the whites agreed that the family should be the decision-maker.

The report concluded that important qualities for physicians included cultural sensitivity and cultural competence (Rabow, Hausler, & Adams, 2004).

The Physician’s Influence in End-of-Life Planning

Many studies indicate that the physician is a key player in discussing end-of-life planning. The Charlotte County, Florida study mentioned above concluded that a major factor influencing older adults to complete advance directives is whether physicians discuss advance planning with them.

Unfortunately, seniors commonly wait for physicians to initiate such discussions rather than make the first moves themselves. As a result, he conversation may never occur. General Accounting Office (GAO) research indicates many doctors are reluctant to discuss end-of-life planning with their patients for a number of reasons. These include a lack of training in end-of-life planning, a conviction that death is an inappropriate outcome, or feeling that they are not adequately compensated for conducting such conversations (GAO, 1995). Even if physicians remain silent about advance directives, seniors should initiate such discussions.

According to the GAO, “The American Medical Association and others believe that financial incentives would encourage discussion of advance directives. They would like insurance companies to reimburse physicians for time counseling patients about advance directives” (GAO, 1995). You can encourage your clients to approach their physicians, or if needed, you can act as the point person in arranging the discussion.

Grassroots Campaigns for End-of-Life Planning

As mentioned earlier, nationwide the percentage of adults completing an advance directive remains relatively small, but there are cities where the percentage is much higher. For example, a community-wide grassroots advance directive campaign in La Crosse, Wisconsin, called Respecting Choices helped thousands of that city’s adults complete their own advance directives (Gunderson Lutheran, 2004). That campaign employed videos and printed materials, together with trained staff in a coordinated approach and appears to be successful. A subsequent study by the group found that 85 percent of those who died during one year (April 1995 to March 1996) had a signed advance directive. Of those dying with an advance directive, 96 percent of their documents were found in the patients’ medical records. This Respecting Choices campaign is not being replicated in other communities across the country. For more information, visit the Respecting Choices website at http://www.gundluth.org/eolprograms.

Similarly, CRITICAL Conditions is a community-based, educational program designed by Georgia Health Decisions to assist people in understanding and planning for their health care at the end of life. The CRITICAL Conditions program features public awareness materials, a planning guide, family workshops, personal agent workshops, trained community counselors, and training modules for health are providers. CRITICAL Conditions is being introduced throughout the state of Georgia through organizations wishing to sponsor the program and seeks to expand the program across the country. For more information about CRITICAL Conditions, contact Georgia Health Decisions at 800-544-5741, or visit their website at http://criticalconditions.org.

Aging with Dignity is a private, nonprofit organization based in Florida that is dedicated to affirming and safeguarding human dignity at the end of life. The developed the Five Wishes too. As a user-friendly advance directive that clearly documents individual preferences regarding the type of medical treatment desired as well as providing information about the values and benefits the individual wants to have guide end-of-life care decisions. Five Wishes provides an excellent vehicle for facilitating family discussion of these issues.

End-of-Life Choices is a 24-year-old nonprofit organization based in Denver, with 32,000 members in 60 chapters. The organization advocates for choice, dignity, and control at the end of life, including the option of legal physician aid in dying under careful safeguards. According to Senior Vice President Faye Girsh, EdD, advance directives are essential but are limited in that they apply only to the refusal or withdrawal of treatment. “People who have completed the forms are not guaranteed a peaceful death since only half of those who die are hooked up to something they can refuse,” Girsh says.

Others who are dying and who wish to have more control over their death require other legal choices. Girsh authored a booklet titled Choices at the End of Life, which includes information on hospice, refusal of food and hydration, terminal sedation, the Oregon law, and ending one’s own life in a humane and dignified way. It also includes post-death options such as what to do with your body, your obituary, and ethical wills. In addition to printed information, End-of-Life Choices provides speakers and workshops. To find out more you can visit them at http://www.endoflifechoices.org, or call 800-247-7421.

 Euthanasia, which can take different forms, is the act or practice of terminating the life of a person (Gifis, 1996). There is a difference, however, between terminating or rejecting medical treatments – sometimes called the right to die – and assisted suicide and mercy killing. State laws and court decisions have upheld the right of all persons to refuse medical treatments. If a senior is incompetent, an advance directive serves to indicate the individual’s wishes for terminating treatment. 

The information above is reprinted from Working with Seniors: Health, Financial and Social Issues with permission from Society of Certified Senior Advisors® . Copyright © 2009. All rights reserved. www.csa.us