We’ve written previously about important healthcare documents everyone needs to have on file. The most important of these are your will, and in addition certain advance directives for your medical care. The need for these written directives often does not seem important when health is good. However, as health declines, it is smart to be prepared and to share your medical healthcare preferences in the event of a serious accident, hospitalization or continuing palliative care.
Today’s advanced and widespread use of medical technology has created the need for these advance directives. You may have seen a few of the numerous studies performed documenting deficits in medical care of the dying. Aggressive medical intervention leaves millions of Americans confined to nursing homes and over a million are left so medically weak that they survive only with feeding tubes. Your own circle of friends and relatives probably includes several families overcome with the financial burden of considerable medical costs. At least one “national study* shows some family members had to leave work, 31% lost “most of their savings” and 20% reported loss of their major source of income while handling these medical situations. Over the years as more Americans, either personally, or with a loved one, experienced the burdens and diminishing benefits of invasive and aggressive medical treatment while in a poor prognosis status, pressure began to mount to devise ways to avoid the suffering and costs associated with treatments the patient did not want. The first formal response was the living will.
What is a living will? A living will is the oldest form of advance directive, first proposed by Illinois attorney and human rights activist, Luis Kutner in 1969. Kutner drew from existing estate law, by which an individual can control property affairs after death (i.e., when no longer available to speak for themselves) and he devised a way for an individual to express his or her health care desires when no longer able to communicate current health care wishes. It was dubbed the “living will” because this “will” was used when an individual was still alive but no longer able to make decisions.
A living will usually provides specific directives about the course of treatment that is to be followed by health care providers and caregivers. Sometimes a living will may forbid the use of burdensome medical treatment. It may also be used to express the patient’s wishes about foregoing food and water via feeding tubes or other medical devices. Though today it is requested upon admission to almost every hospital and skilled care facility, the living will is used only if the individual has become unable to give informed consent or refusal of care due to incapacity. Very general or very specific statements can be found in living wills. An example of a very specific living will statement might be “If I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that I have an end stage medical condition, I direct that life-sustaining measures that would serve only to prolong my dying, be withheld or discontinued.” However, studies have shown that adults are more likely to complete these documents if they are written in everyday language, rather than containing specific therapy, medications and treatments attempting to cover every possible scenario.
By the late 1980s many people remained unaware of advance directives and even fewer actually completed them. At the time, not every health care provider and medical organization promoted the use of these documents. The Patient Self-Determination Act of 1990, attempted to address this awareness problem by requiring health care institutions to better promote and support the use of advance directives. The publicity surrounding the Terri Schiavo matter in Florida also brought the use and benefits of living wills back into the spotlight. Over the years as living wills began to become more prevalent, key deficits were discovered. Many living wills tended to be limited in scope and often failed to fully address presenting problems and needs. Many individuals wrote out their wishes in ways that might conflict with quality medical practice. It was determined that a living will alone might not be sufficient to address many important health care decisions. These concerns led to the development of additional advance directives such as the “health care proxy appointment” or the more popular “medical power of attorney.”
Remember that living wills include information and decisions made at the time of writing. As circumstances change, your living will needs regular updating to ensure that the correct course of action can be taken when the time arrives. For those of us caring for elderly parents, an important part of our care is helping them put the proper advance directives in place before they are needed. If you haven’t already done so, the time is now to seek the assistance of qualified professionals to discuss your family’s situation and create the advance directives unique to yours and/or your parents’ circumstances. Your family and loved ones will be well prepared for health emergencies only when they are aware of your healthcare preferences. We can never be sure when the time for difficult medical decisions will arrive so it is best to be prepared.
*Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients' families . JAMA . 1994;;272:1839-1844