Terms Health Care Agents Should Know
Last week’s blog dealt with the role of a health care agent, the person chosen to make health care decisions for an individual when he/she is no longer able to do so.
This is a serious responsibility. As the health care agent for your loved one, you may even have to make life or death decisions. Documented information from the person’s living will as well as personal knowledge you have of the person will help you decide whether to consent to surgery, refuse treatment, or utilize life-support mechanisms. In this process, you may encounter terms that are not familiar or need a more precise definition. Following are some of these:
Diagnosis is the identification of the nature of an illness or problem. A terminal diagnosis refers to an irreversible and fatal disease or condition. A person may live for some time following a diagnosis of a terminal condition, but generally, regardless of intervention, the outcome cannot be reversed, and life expectancy is six months or less.
Prognosis is the likely progression and outcome of a disease or ailment. Although this is considered an art of “foretelling” the course of the disease, it is important to ask the health care provider for this outlook. The answer will be based on the prospect of recovery or relapse as anticipated from the usual course of that condition or indicated by aspects of the person’s situation such as age and co-morbidities.
Acute care is short-term medical treatment for injuries resulting from trauma (such as a fall or auto accident) or a reversible disease with the expectation of recovery. These usually involve therapeutics the hospital and may require time in a rehabilitation facility. This is what I experienced when I was stricken with Guillain-Barré Syndrome (GBS) in 2018.
Intensive care is the treatment of critically ill patients in the intensive care unit (ICU). Life-sustaining interventions are often used to stabilize the patient with the prospect of recovery. Life-sustaining interventions are those treatments that are meant to stabilize the patient’s condition and extend life as long as possible. These include hemodialysis (using a dialysis or kidney machine), mechanical ventilation, and artificial nutrition and hydration.
Palliative care (or comfort care) is provided to patients who have an irreversible or fatal illness or condition. The goal in palliative care, which often takes place at a Hospice residence, is not cure but making the patient comfortable and meeting physical, spiritual and emotional needs during the final days of life.
During the decision-making process, you will probably hear someone (family member, medical professional, friend) use the term quality of life. This denotes a person’s general well-being regarding health and happiness. Some medical treatments can impair a person’s ability to enjoy life while providing few benefits. I have known more than one cancer patient whose treatment became so difficult that they declared, “Enough is enough.” If you encounter this situation, it may be helpful to discuss with the doctor in charge of care exactly what can be expected from further treatment. Being utterly miserable for months to increase your life expectancy by two weeks may not be the best choice for everyone.
Some treatments can and do enhance and prolong life. Sometimes people fully recover from what is referred to as a “fatal illness.” I have seen this as well…which makes these decisions that much more difficult to make. I have a brother-in-law whose doctor told his wife (my sister) to begin making funeral plans. That was almost ten years ago. Although there have been some struggles, they continue to have a good quality of life.
Here is a pair of contrasting words you may encounter: benefit refers to an intervention that is expected to have a positive effect on the patient’s health; burden is used to describe an intervention with a potentially negative effect. It is important to always ask the health care provider about both the positive and negative effects of all medical interventions. You may need to insist they be straightforward with you. I have known doctors who are hesitant to even talk about the worst-case scenario, believing their responsibility is to present the best possible outcome. There are times when we need to hear that. But to make those grave decisions a health care agent is often called upon to make, you need to know all the facts.
I will close this blog with a similar caveat as last week. Only a few main points have been covered, and yes, they may have induced more questions than answers. Again, I encourage you to do your own research; discuss these issues in detail with you loved one’s health care provider; and most importantly, know what your recipient desires. Then, with lots of prayer, carry out their wishes.
Caring Tip: Five Wishes is a United States advance directive created by the non-profit organization Aging with Dignity. This form has been described as the “living will with a heart and soul”. If your loved one (or yourself) has not prepared a living well, I highly recommend this sympathetic document. To learn more, go to Five Wishes online.