By Glenn Ellis
Most of us have experienced being in the hallway of an intensive care ward of a hospital in a heated discussion with other family members, while just a few feet away, on the other side of the door, lies a cherished family member is hanging in the balance of death. Comments go back and forth over what direction the medical staff should go.
Life support or not? Discontinue intravenous feeding? Should they “bring her back” (resuscitate) if her heart stops? The questions change with each day the patient survives to another sunrise. No matter how, or when, death occurs, surviving family and friends are left with the belief that, “the doctors didn’t do enough”, or “the hospital killed her and cause her to suffer unnecessarily”.
There are some little-known terms that most of us only hear once during our lifetime: Advance Directives; Do Not Resuscitate Orders; End-of-Life Issues; Informed Consent; and Termination of Life-Sustaining Treatment. These are medical terms that refer to the myriad of issues surrounding patients as they receive medical care during the last stages of life.
In recent years, I have found myself in a position to observe, and to a lesser level, participate in these dilemmas. I have concluded that most of us are poorly prepared for these experiences. We must start now to learn about the terms mentioned above and prepare ourselves in a way that will allow us to be productive participants in the transition of the lives of those we love and care for, instead of active participants in chaos, confusion and added suffering. This way, we can contribute in making the process a more dignified and comfortable situation for the patient.
Let me briefly described what each of these terms mean:
Advance Directives: Advance directives are usually written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making. Advance directives usually are the written documents that provide information about the patient’s wishes and/or her designated spokesperson.
Do Not Resuscitate Orders: A do not resuscitate (DNR) order is another kind of advance directive. A DNR is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. (Unless given other instructions, any hospital staff will try to help all patients whose heart has stopped or who have stopped breathing.) You can use an advance directive form or tell your doctor that you don’t want to be resuscitated. In this case, a DNR order is put in your medical chart by your doctor. DNR orders are accepted by doctors and hospitals in all states.
End-of-Life Issues: There are several goals when caring for someone near the end of life: 1. Control of pain and other physical symptoms; 2. Involvement of people important to the patient. Death is not usually an individual experience; it occurs within a social context of family, significant others, friends, and caregivers; 3. A degree of acceptance by the patient. Acceptance doesn’t mean that the patient likes what is going on, and it doesn’t mean that a patient has no hopes–it just means that he/she can be realistic about the situation; 4. A medical understanding of the patient’s disease. Most patients, families, and caregivers come to physicians in order to learn something about what is happening medically, and it is important that the doctor recognizes the need for information.
Informed Consent: The most important goal of informed consent is that the patient has an opportunity to be an informed participant in his health care decisions. It is generally accepted that complete informed consent includes a discussion, with the doctor, of the following elements: the nature of the decision/procedure; reasonable alternatives to the proposed intervention; the risks, benefits, and uncertainties related to each alternative; assessment of patient understanding; and the acceptance of the intervention by the patient
Termination of Life-Sustaining Treatment: Patients who are receiving treatments or interventions that keep them alive will many times face the decision by their doctors to discontinue these treatments. Examples include dialysis for acute or chronic renal failure and mechanical ventilation for respiratory failure. In some circumstances, these treatments are no longer of benefit, while in others the patient or family no longer wants them.
My hope is that this will serve to stimulate you to search for more information; leading to a more informed and prepared community.
Soon we will see more of these issues surfacing in nursing homes and hospitals. Don’t forget, “no one gets out alive”! So be prepared. Who will make life or death decisions for you, if you can’t?
Pass this column along to someone you care about.
Remember, I’m not a doctor. I just sound like one.
Take good care of yourself and live the best life possible!
The information included in this column is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
Glenn Ellis, is a Health Advocacy Communications Specialist. He is the author of Which Doctor?, and Information is the Best Medicine. For more good health information, visit: www.glennellis.com.
