by Barbara Boone McGinnis, CELA
As we age, most of us will confront chronic health conditions. Often, these conditions place us in circumstances where we need help (whether we want it or not). One form of assistance we may need is health care advocacy. This article discusses several reasons why a health care advocate is important.
Informed Activated Patients Tend to be Healthier
One of the problems with the current health care system is that it is not designed to help patients stay healthy between doctor visits. A health care provider’s failure to provide information, or the patient’s inability to understand it, leaves patients not knowing what to do. And if they don’t know what to do, they won’t do it.
Patients become informed, activated and empowered when they understand the disease process and realize their own role as his or her daily self manager. This happens when they have sufficient motivation, information, skills and confidence.
One function a health care advocate serves is assisting elderly and disabled patients in understanding and retaining information communicated by health care providers. Families and caregivers should become engaged in the patient’s self-management. They can do this by going to the doctor with the patient, or by following up after the visit, to make sure any continuing or future treatments are clearly understood.
A good advocate will work with the patient to facilitate understanding and to set goals so that, in the absence of dementia, the patient buys-in to his or her treatment regimen. Even where dementia is present, an effective advocate will provide decision support, trying to minimize hostility to treatment regimens and will work to ensure that the patient avoids harmful behavior.
Informed Decision-making Process and the Right to Choose
Informed consent is more than simply getting a patient to sign a written consent form. It is a communication process between a doctor and patient that results in the patient’s consent to a specific treatment. But, what happens when the patient can’t consent? Perhaps the patient is unconscious, has a chronic condition that inhibits communication, or has dementia. In those situations, it is important to have an advocate who can stand in for the patient and make necessary decisions.
A good advocate will become and remain knowledgeable about
- the patient’s diagnosis;
- the nature and purpose of proposed treatments or procedures;
- the risks and benefits of the proposed treatment;
- the risks and benefits of the alternatives; and
- the risk of doing nothing.
An effective advocate will work to understand the patient’s values (which may be different from those of the advocate), and will insist that the patient’s values be honored. For example, if the patient has stated that he or she would never want blood transfusions, then the advocate should refuse to permit blood transfusions regardless of the advocate’s personal beliefs.
Sometimes a patient is in an unsafe environment. This could be due to structural factors, such as home design (e.g., stairs), or could be due to inadequate supervision. Sometimes patients will neglect their own well-being by refusing to use medical devices such as canes or walkers, or by forgetting to take medications when they should. At other times, they will forget to eat, or may do unsafe things such as leaving a stove on or driving in an unsafe manner.
The consequences these actions can be deadly. An effective advocate will monitor the patient to identify safety hazards and minimize them. In many cases this may require negotiation with your loved one as we balance safety and dignity issues. Risk minimization, not elimination, is frequently the goal since depriving the patient of dignity causes other problems which can be just as serious, such as depression.
Medical Errors and Adverse Reactions
Most patients trust doctors with their lives, but even doctors make mistakes. The IOM report, To Err is Human: Building a Safer Health System (2000), indicates that between 44,000 and 98,000 Americans die each year as a result of medical errors. Errors and adverse reactions are expensive, both in dollars and in lost chances (e.g., the chance to improve and go home).
Medical errors, such as medication errors, are preventable. A good advocate will know something about the patient’s normal condition and will be on the lookout for unexplained changes in condition or behavior. Unexplained changes can indicate an error or an adverse reaction to a treatment or condition. The key to minimizing any harm caused by errors or adverse reactions is quick recognition and response.
Minimizing Family Conflicts
We all know that where two or more individuals have decision-making power, chances are very good that there will be at least two opinions (and often more) about what should be done. One way to minimize conflict is by appointing one advocate who will “take charge” of health care decisions when the patient can’t speak for himself or herself. This is usually done by signing a health care power of attorney (“advance directive”) that appoints a health care agent. It is important to designate a backup agent in case something happens to the primary agent.
The appointed agent should listen to other family members, but is the ultimate decision-maker and should work to implement the patient’s values.
If you need help identifying a health care advocate, Takacs McGinnis Elder Care Law may be able to assist. Just give us a call at 615.824.2571.