Governor Schaefer signed Tuesday the Health Care Decisions Act, passed by the General Assembly in its just-concluded session. The new law will take effect on Oct. 1. Maryland's citizens should be aware of its content and implications.
The legislation makes Maryland citizens better able to express their desires about their medical care. The law also breaks new ground in allowing citizens to make decisions about the care of family or close friends who can no longer make decisions for themselves and who did not previously express their wishes in writing.
Ideally, we would all live a very long time and then die a dignified death with the least possible pain and suffering. Unfortunately, the reality is often very different. The longer we live, the more likely it is that the time will come when the body's organ systems (circulation, kidneys, etc.) start to fail. While modern medicine has made great advances, it remains largely unable to reverse the ravages of chronic illnesses. Also, as more creative ways have been found to save the lives of younger individuals, such as those with serious head injuries, more individuals, young and old, linger in persistent vegetative states. They have no realistic hope for recovery, and face years, or even decades, of repeated infections and other suffering before they finally die.
Every day in the United States, thousands of individuals linger in states of advanced decline, with irreversible conditions such as advanced Alzheimer's Disease, other degenerative neurological conditions such as ALS ("Lou Gehrig's Disease"), or with terminal illnesses such as cancer.
In the past several years, much progress has been made in this country in clarifying important ethical issues and the rights of people to make health care decisions without judicial intervention or state-imposed restrictions. Many studies reaffirm that most people do not want extraordinary measures that prolong life but cannot prevent significant recurrent pain and suffering. Going beyond that, many people feel that their lives would not be worth living if they would lose their ability to relate meaningfully with others or to do more than just stay alive.
In the experience of health care providers, people's opinions and values about these issues span the whole spectrum, regardless of their faith or background. Thus, no one approach or perspective should take precedence over others.
In 1990, in the case of Nancy Cruzan, the U.S. Supreme Court affirmed the constitutional right of all competent adults to refuse some or all life-sustaining medical technologies, which may include treatments such as blood transfusions, surgery, antibiotics, kidney dialysis, artificial ventilation, cardiopulmonary resuscitation (CPR) and tube feedings.
This helped reinforce the important principle that medical care is a means to an end, not an end in itself. This means that people should be able to decide that medical care should be rendered to the extent that it has value for living, not just because it exists. It left to the states the right to establish standards for deciding what to do about people who had never made formal directives but then got into a situation where such decisions had to be made.
Since then, the trend among the states has been to formalize the rights of families to make medical care decisions in conjunction with physicians and other appropriate support, without having to go to court. This new Maryland law strengthens those rights for the citizens of this state. It:
* supports the right of competent individuals to make an advance directive (a statement of wishes about health care treatment that takes effect in case of later incapacity)
* allows someone to name another person (their "agent") to make health-care decisions for them if they become incapacitated
* enables a close family member or friend to make a decision to withhold or withdraw life support for someone who did not make a formal advance directive but is terminally ill, in a coma, or in the advanced stages of a progressive, fatal disease
* allows Emergency Medical Service personnel (paramedics) to honor "Do Not Resuscitate" wishes outside of the hospital
* allows physicians to use their judgment about providing "futile" medical care
* guides judges in court cases regarding the withholding or withdrawal of life-sustaining treatment.
Effective ethical decision-making has to be a partnership between physicians and patients or those forced by circumstances to make decisions for others. The physician has critical information that laymen need to understand a medical situation. The patient has values and wishes that the physician must consider in making treatment recommendations.
In facilities such as hospitals and nursing homes, other staff may have pertinent information, observations or perspectives that should be considered in any decisions or recommendations. This law supports open, honest discussion between physicians, other care providers, patients and families on the value of medical care to restore or maintain an acceptable quality of life.
Over the years, much clinical and ethical decision-making has unfortunately been guided by fear of the consequences for those making the decisions more than by anticipation of the benefits of the decision for the patient. Relatives often worry about whether they are doing the right thing and whether others will disapprove of their actions. Doctors often worry about potential legal consequences, however exaggerated. The objective of this new legislation is to help move away from these perspectives and instead consider primarily what is best for the patient, based on their values and previously expressed wishes.
To provide guidance, many more people have been making advance directives. Advance directives are like an insurance policy; they are written with the hope they will never be needed. Ideally, everyone should make an advance directive, in consultation with their physician and their family. Doing so is the surest and safest route to insuring that one's wishes will be honored later on. This law supports, but does not require, making advance directives.
The two main kinds of advance directives are 1) appointment of an "agent" (also called a "durable power of attorney") and 2) a living will. The process of appointing an agent is more flexible than the living will and can cover any medical situation, including that of terminal illness. Therefore, while this law offers optional forms for either, appointing an agent, with some instructions about treatment preferences, is now considered by far the best option.
But what should people do if they are thrust into the role of making a crucial decision for someone else? First, they should ask the physician to answer certain crucial questions:
* What is the problem?
L * What medical options are available to treat the condition?
* To what extent could the medical treatment relieve pain and suffering, prevent repeated or further complications and restore or improve quality of life?
* How likely is the treatment itself to cause or to allow further complications, pain or suffering?
If the value of such treatment is unclear, then a "time-limited trial" may be worthwhile. This means that a treatment is attempted for a period of time, and then its benefits are reassessed. If there is significant improvement, the treatment may be worth continuing. medical care cannot reverse an underlying condition or improve an individual's health and if frequent acute illnesses occur despite repeated medical treatment, then it may well be futile to continue it indefinitely.
Once given the medical facts, a decision-maker should review what he knows of the values and wishes of his relative or friend with the physician and any other supporting individuals, such as clergy or other family. Based on this, the next question is, "What did this individual say he or she would want in this situation?" If that is not clear, the next question becomes "What would this person want if he or she could speak rationally at this time?" If this cannot be determined, an assessment needs to be made as to whether continued treatment is in that person's best interest.
While judges can play a role as impartial intermediaries in disputed situations, they are not necessarily wiser nor do they have better judgment than close relatives. We could not possibly put all or most of these cases before an already grossly overburdened court system, anyway.
Several things can be done in to improve ethical and clinical decision-making processes.
Medical education should teach ethical decision making in conjunction with clinical training, emphasizing that the two are inseparable. Hospitals and nursing facilities should comply more enthusiastically with the spirit of Maryland's Patient Care
Advisory Committee law by providing information and education all incoming patients and residents, by supporting patients, families, and physicians to make shared decisions -- especially in complex or difficult cases -- and by recognizing and accommodating the plurality of values of citizens. Hospitals should do more with the requirement to have ethics education for their staffs, and should make available more clear and understandable descriptions (including videos) about various medical technologies and their potential uses and actual limitations.
A key concept in all such education is "flexibility." We want to continue to move away from the idea that ethical decision making requires choosing "one extreme or the other" (either treat everything or treat nothing) and toward the concept that treatment options should be selected and then re-evaluated and revised if necessary, depending on how they affect outcome.
Appropriate education of Maryland's citizens is also crucial if they are to exercise their rights to make more decisions for themselves. Maryland's secondary schools and colleges should teach more about the basics of modern medical treatment options. Ethics discussions should consider basic medical ethics decision making and provide students with real-life examples to consider and debate.
For their part, physicians should feel freer to make medically sound decisions without fearing legal consequences. They should recognize the available resources and get necessary help their patients by encouraging them to get vital support and information. And, they should always ask the question, "What is the value of a medical treatment for this person's life and overall well-being?" When the time comes that treatment no longer makes a difference, physicians should reassure patients that their loved ones will not be abandoned. Comfort measures and pain relief are an appropriate response to the request to "do something."
This new law reaffirms the trend, since the Cruzan case, toward assuming that ordinary people can -- with the right information and guidance -- make decisions for themselves and others that are at least as good, and usually better, than those that judges or doctors may make for them. It gives Maryland's citizens the opportunity to make humane, rational decisions about difficult, emotionally charged issues in times of crisis. In short, its thoughtful, effective application can go far toward enabling patients and families to make health decisions in Maryland.
Steven Levenson is medical director of Asbury Methodist Village in Gaithersburg. Diane Hoffman, an associate professor at University of Maryland Law School, worked on drafting the Health Care Decisions Act.