Understanding Health Care Planning Issues Is Sometimes More Important Than Estate Planning
UNDERSTANDING THE IMPORTANCE
OF END-OF-LIFE PLANNING ISSUES
By Jan L. Warner
No issue has received more attention over the last 20 years than the right of patients to refuse medical treatment, a basic right that was recognized as early as 1914 by the highest court in New York: "Every human of adult years and sound mind has the right to determine what should be done with his own body."
Since the landmark New Jersey Supreme Court decision concerning Karen Ann Quinlan which was decided in 1976, the courts generally have held that a patient has a fundamental right to refuse medical treatment.
The trend after the Quinlan case supports the concept that a patient has the right to refuse treatment -- even when death would result -- and that the fundamental right to refuse treatment is not lost when the patient becomes incompetent so long as he or she has signed advance directives.
Advance directive laws do not create the right to refuse treatment but, instead, provide a mechanism by which people can exercise these rights, rights that have been recognized by the Supreme Court of the United States as a "liberty interest" under the Fourteenth Amendment according the United States Supreme Court in the case of Nancy Cruzan which was decided in 1990.
Americans are living longer. But with advanced age comes more catastrophic and chronic illness -- and increased health care costs, particularly during the last year of life. And as the number of Americans infected with AIDS continues to grow, an added strain will be placed on our health care system.
m Between forty and fifty percent of all health care expenses are incurred during the last year of life, most within the last two months.
m More than one-seventh of the annual $1 trillion annual health care budget is spent during the last six months of life, most during the last two months of life.
m Seventy percent of all Americans will face at least one end-of-life decision during their lifetimes, yet less than 20 percent of Americans have signed advance directives.
Nothing is more frustrating than being forced to face an end of life situation with a family member after the fact, when options are limited. The only way to prepare our clients in advance for end-of-life decisions is to provide them with health care planning. Health care planning is an educational process which culminates with the execution of advance directives - living wills and durable powers of attorney for health care - that allow the client to say now what treatment he or she would want -- or wouldn't want -- later and under what circumstances.
Health Care Planning Is Essential To Estate Planning
Seeing that more than 28% of Medicare dollars were being spent during the last year of life, Congress began the process on December 1, 1991: The Patient Self-Determination Act now requires that all health care providers participating in the Medicare and Medicaid programs must educate their patients and the community about living wills and other advance health care directives -- or lose their rights to collect Medicare and Medicaid.
Health care planning has become not only an emotional issue, but also an important economic issue, an integral part of retirement and estate planning. In the final analysis, those who wish to maintain control over their futures and to manage end of life issues must be educated about advance directives.
But planning for future health care needs presents difficult questions for clients and their families. And because those to whom they may turn for help often are not trained in the intricacies of health care and the issues involved in the termination of life support, important questions often go unanswered.
But People Have Many Concerns
Our greatest challenge as lawyers is to bring our clients to the realization that advance directives are essential to appropriate estate and financial planning and to help them design an appropriate plan. Why is this so difficult? Because people have many fears and concerns about death and the dying process, including....
1. That their last years will be spent alone in an institution.
2. That the wrong people will make medical decisions for them.
3. That the high cost of medical care will brings insignificant benefit.
4. That by signing an advance directive, they will be denied quality health care and will suffer pain.
5. That they will be denied the comfort of a dignified death.
First, We Must Understand The Basics
In order to begin discussing these issues with our clients and then to begin helping them plan their futures with appropriate documents, we must first understand some of the conditions that, although not terminal illnesses, may incapacitate our clients and raise the need for them to have advance directives in order to avoid the emotional and economic effects upon their families....
1. Persistent vegetative state, permanent unconscious state, or coma.
2. Unconsciousness during the course of treatment for a diagnosed illness, whether it's terminal or not. In this instance, unconsciousness means temporary incapacity during which medical decisions must be made.
3. Advanced dementia and neurological disease.
We should also become familiar with some of the technology and treatments which may be used to sustain life, either when there is a chance for recovery or not:
1. Cardiopulmonary resuscitation is used to restore heart beat and maintain blood flow and breathing after a cardiac or respiratory arrest.
2. Mechanical ventilation is a procedure through which oxygen is delivered directly to the patient's respiratory system through tubes.
3. Renal dialysis is an artificial method of filtering the blood and maintaining chemical balance after kidney failure.
4. Antibiotics are used to control infection.
5. Artificial nutrition and hydration procedures include:
a. nasogastric tube that goes from the nasal passage into the stomach.
b. gastrostomy which is a surgical insertion of tube directly into the digestive tract.
c. parenteral feeding which is intravenous feeding directly into the bloodstream.
Both Informed Consent And Competence Are Essential
Because competent adults have the right to determine their own care, there is a legal presumption that the patient has "decisional capacity," that is the ability to understand the situation and the consequences of his or her decision.
To be a valid exercise of the right to self-determination, a patient must give his or her "informed consent" which is based upon a number of elements, including.....
m The patient must understand the condition, prognosis, treatment and tests proposed; the alternatives for treatment and non-treatment; the risks and benefits of each; and the uncertainties of each;
m The patient must be able to communicate the decision and
m The patient must make a voluntary decision without undue influence.
Because they are required to inform their patients about the alternatives, risks, and benefits of treatment to comply with their informed consent obligations, physicians are far from being impartial information providers. In fact, the physician is ethically mandated to encourage the treatment considered to be in the patient's best interest. But as with everything else, there are exceptions to the requirement of informed consent, including:
m Where emergencies require immediate decisions;
m Where the patient does not want the information and waives these rights;
m Where the patient is incompetent. "Incapacity" or "Incompetence" means that the patient is physically or mentally unable to communicate a willful and knowing health care decision.
The Types of Advance Directives
Now let's review briefly the types of advance directives that are available to our clients:
1. Oral and other non-written directives may be valid, but generally after they have been proved in court at expense to the family.
2. The living will, although a misnomer, is a way to tell the physician not to begin or continue life-sustaining treatment if the patient becomes terminally ill or is in a persistent vegetative state.
3. Durable powers of attorney for health care, if properly drafted and executed, are the best way for individuals to exercise self-determination in health care.
Although not an advance directive per se, you should also know about "DRN's" - do-not-resuscitate orders. These are written medical directives, prepared by the attending physician, which document instructions by an adult patient (or the patient's proxy or surrogate) that cardiopulmonary resuscitation is to be withheld should the patient suffer cardiac or respiratory arrest.
Terminal Illness Is Not The Only Issue
Though most people think about terminal illness when they think about end of life issues, the Cruzan family came to know all too well that terminal illness is not always the issue.
Until the United States Supreme Court issued its first "right to die" decision on June 25, 1990, Nancy Cruzan lingered in a persistent vegetative state for seven years in a Missouri institution after suffering severe brain damage as a result of an automobile accident. Without health insurance, her $150,000 annual health care bill was paid for by Medicaid.
After a first round of appeals that saw the United States Supreme Court affirm a state court decision that did not allow the removal of Nancy's feeding tubes, her parents succeeded in presenting "clear and convincing" evidence of Nancy's desires not to want to continue on life support under these circumstances. This resulted in an order authorizing the removal of the feeding tube and allowing Nancy Cruzan to die.
Although balanced against these individual rights are such state interests as preservation of life, integrity of the medical profession, and prevention of suicide, they rarely outweigh the right of a competent patient -- or an incompetent patient with no reasonable prospect for recovery -- to refuse treatment or to have futile treatment withdrawn.
Living Wills Are Only Part of The Answer
Because it focuses on the desire to have medical treatment terminated or never started, the living will is generally restricted to withholding or withdrawing heroic measures rather than a carefully thought out directive of health care decisions.
Once prepared, most people feel secure and do not review their situations regularly. And this may be a mistake because, among other things, the living will can be too vague when it comes to just what type of treatment is to be withheld or not continued. Therefore, doctors often do not know with certainty what the patient's desires really are.
The living will becomes effective only if the patient is terminally ill or in a permanent vegetative state. If this is the case, it will not be effective if the patient is in a permanent coma or suffers from Alzheimer's disease.
The Appointment of A Surrogate May Be Stronger
Although there is little question but that written advance directives provide the most convincing means of reflecting a person's values and desires when faced with a decision to forego or withdraw life sustaining treatment, when these directives appoint a surrogate to act when the principal is no longer able to participate in the decision-making process, the wishes of the incompetent patient, expressed while competent, may be even stronger.
By selecting a surrogate, the patient avoids the family conflict which often arises when there are multiple potential surrogates with multiple potential agendas and no advance directive by the patient.
The Durable Power of Attorney for Health Care Is More Flexible
For these and other reasons, the durable power for health care (DPAHC) is clearly preferable over a living will since it applies in a broader range of health situations and designates a person to act as a surrogate to provide consent in a full range of health care decisions, including refusing or terminating life sustaining treatment.
With a DPAHC, the client can direct that everything possible be done to preserve life, or that nothing be done, or that some procedures be done and others not be done. These documents can be flexible enough to deal with unforeseen developments by giving the agent the authority to act as the agent sees fit, or they can specifically limit the agent's authority to act. They can also provide that the power is not effective until the client is unable to act, and then the client can direct how the agent is to act.
Because the right to control one's own life is very personal, so long as the document is sufficiently explicit to show that the patient clearly would have refused treatment under the circumstances, the health care provider should have no difficulty in accepting and implementing the decision. In other words, it's not what a reasonable or average person would have chosen to do under the circumstances, but what the particular patient would have done if able to choose for himself or herself.
The DPAHC is, therefore, the most flexible instrument by which a person can express his or her wishes regarding the withholding or withdrawal of life sustaining medical treatment for a number of reasons:
m It can be drafted by the attorney to address a full range of medical problems, while the living will applies to those who are terminally ill or in a persistent vegetative state.
m While a DPAHC may involve termination of treatment, it also can provide for aggressive care -- making this document philosophically neutral because it does not advocate a particular point of view but, instead, allows the patient to decide based on his or her own values.
m In an important lesson learned from Cruzan, it is best to put something in writing and not to rely upon oral statements. The DPAHC be drafted, for example, to specifically describe whether medical procedures used to provide nourishment and hydration may be withheld or withdrawn.
One of the most important parts of the Cruzan decision is the finding that artificially supplied hydration and nutrition are like any other form of life sustaining procedure and can be withheld or withdrawn.
The key here is that so long as the desires of the incompetent patient can be determined "clearly and convincingly," the wishes of the patient should be legally recognized and honored by care givers.
But Will The Health Care Provider Comply?
Since December 1, 1991, all health care facilities which participate in the Medicare or Medicaid programs have been required to provide all patients on admission with information concerning the rights of the patient under local law with respect to health decisions. These issues include the right to accept or refuse treatment and the written policies of the institution with respect to the implementation of such rights.
This right of patient self-determination was strongly supported in a joint statement by the American Bar Association and the American Medical Association in August 1990. Among other things, this statement encouraged patients and physicians to use and recognize living wills, health care powers of attorney and other medical directives.
But there are rarely provisions for either enforcement of or penalty for non-compliance with advance directives contained in the statutory law. So the question arises: What if the health care provider does not comply with the advance directive?
In a growing trend, a provider's refusal to follow a patient's or agent's request to withdraw treatment can result in liability. For example, in a 1988 New Jersey decision, a hospital was held liable in tort when it maintained the body of a brain-dead man on life support for two days despite the parents' requests for the body. The court determined that the hospital acted negligently by not behaving reasonably to honor the parents' demands.
Another theory of liability which can be used against medical institutions or providers which refuse to honor patients' requests to terminate treatment is damages for the monetary cost of continued care. And providers should also be concerned about injunctive proceedings and civil rights claims which can include attorneys fees.
It is important for lawyers to encourage clients to sign durable health care powers of attorney and other documents which contain clear and convincing evidence of their desires, whatever they may be. Lawyers should try to keep client's end-of-life issues out of the court system. At best, litigation is costly, time-consuming, and uncertain. The overburdened judicial system is ill-prepared to deal with life and death decisions. This litigation becomes emotionally exhausting to the judge and the family. Litigation often pits family members against each other and against healthcare providers. Litigation needlessly invites the intervention of public agencies, the media, and self-appointed guardians of the public interest.
Oftentimes, the glut of "interested parties" involved in attempting to protect the rights of the patient include not only the family, but also the doctors, other caregivers, and state agencies. All too often, this results in unwieldy, lengthy proceedings in the course of which the patient dies and family and friends are not only rubbed raw emotionally, but also impoverished.
Through an educational process, lawyers can provide alternatives that are better than litigation. When lawyers discuss clients' wills and estate plans, they should address the dying process so our clients can come to understandings within their families and with their doctors and healthcare providers in advance.
Failure to communicate is the most common reason the courts become involved in what should be personal decisions. Too few people have Advance Directives. And there are additional, practical questions that will come up and must be dealt with, for example....
m Who should get copies?
m What if there is no regular doctor?
m How is notice of the document to be given to the hospital in an emergency when the patient is unconscious?
m How can living wills or durable powers be revoked?
m Are documents signed in one state valid in another?
Advance directives are not cure-alls, but they are far better than nothing at all. At the very least, they indicate what our clients wanted when they were competent to make the decision.
How Should Clients Be Questioned About Their Desires?
Although there are many schools of thought, the following may be the most direct way to seek information from the client:
1. If you were terminally ill and permanently incompetent, would you want any life-sustaining treatment to be continued?
2. If you were permanently unconscious, whether you were terminally ill or not, would you want any life-sustaining treatment to be continued?
3. Whether terminally ill or not, would you want to be kept alive if you were unconscious, had very little chance of ever recovering consciousness and would almost certainly be very brain-damaged if you did recover consciousness?
4. Whether terminally ill nor not, would you want to be kept alive if you were gravely ill, had only a very slight chance of recovering (5 percent or less) and would probably require weeks or months of further treatment before it was clear whether or not you would recover?
5. If you chose to have life-support discontinued in any of the above conditions, would you desire, in addition to discontinuing any other life-support measures, that fluids and nutrition be discontinued?
GLOSSARY OF TERMS
Advance Directive: Expression of preferences about medical treatment made prior to mental incapacity. A generic term that includes such documents as living wills, healthcare powers of attorney, and medical directives.
Best Interests: Standard by which third persons make healthcare decisions for mentally incapacitated patients based on what they believe to be "best" for a patient. Patient's wishes are not considered.
Power of Attorney: Appointment of an agent to make a broad range of healthcare decisions that are not limited to end of life situations.
Guardian ad Litem: A person appointed by a court to protect the interests of a ward -- incompetent person or a minor -- in a legal proceeding.
Heroic Measures: A non-specific, non-medical term by which people intend to define artificial life support and other end of life medical intervention.
Incompetent: Patients are incompetent to make medical decisions when they are either 1) no longer able to understand information about their medical condition and its implications, or 2) able to understand, but unable to communicate decisions. A patient's ability to understand other unrelated concepts is not relevant.
Living Will: A document signed while a person is able to make health care decisions that expresses preferences for end of life medical treatment in the event of a hopeless illness or injury. The scope of application is defined by state law.
tative State: Sometimes referred to as "permanent unconsciousness," PVS means that brain function is permanently lost although there may be motor reflexes.
State Interests: Right-to-die decisions typically weigh the patient's right to refuse life-sustaining treatment against four state interests: 1) the preservation of life, 2) the prevention of suicide (usually not implicated because death which occurs after the removal of life support is due to natural causes, not intended or set in motion by the patient), 3) protection of innocent third parties, and 4) safeguarding the integrity of the medical profession.
Judgment: Standard by which third persons make healthcare decisions for mentally incapacitated patients by evaluating patient's past statements, attitudes, and beliefs. The decisionmaker stands in the patient's shoes and makes the decision the patient would have made under those circumstances.
Terminal Condition: Definitions of "terminal" vary from state to state with the focus generally on life expectancy and/or the possibility of a patient's return to cognitive life.
© 1998 Jan L. Warner
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