Decisions, decisions: How do you make the tough ones?

Engaging in a discussion about end of life issues does not have to be a dark, depressing matter.  Many people are willing to spend a Saturday learning CPR, but their time would be better spent drawing up an advance directive. — Stephen P. Kiernan, author of Last Rights: Rescuing the End of Life from the Medical System, St. Martin’s Press

In most health-care situations, you have the right to make decisions about your medical treatment. Based on the information you receive, as well as your values and beliefs, you can weigh the risks and benefits of the proposed treatment, its likelihood of success and any alternative courses of treatment. Ultimately, you decide which treatments to accept and which ones to refuse.

However, what if the time comes when your illness, injury or disability prevents you from being able to make your own decisions? Even if you are unable to make the decisions, a decision will be made. The “Living Will” or “Advance Directive” decisions are made based on how much control you wish to exert over those decisions.

Courts will almost always follow the expressed wishes of a competent adult in these matters. A competent adult can communicate preferences about future medical treatment through advanced directives, executed while the adult is capable of making his own decisions.

More and more people seem to be concerned about the quality of life they may experience as a result of advances in medical technology. These advances have resulted in the ability of the medical profession to extend life where formerly an individual might have died. People seem to be increasingly apprehensive about the quality of the life that they will experience as the result of these advances in medical technology. This may be particularly the case as we each wonder what will happen if we are mentally or physically incapacitated and unable to make our own decisions about medical care.

The definition and understanding of “quality of life” is extremely personal. An acceptable quality of life to someone else may be a fate worse than death to you. You, your doctor and your loved ones should discuss which conditions that might affect your quality of life are unacceptable to you. Here are some definitions to help you with such considerations.

A persistent vegetative state, PVS, is a condition of permanent unconsciousness that is irreversible. It may take six months or more to confirm a PVS diagnosis. PVS occurs when the brain centers that control thinking, speaking, hunger and thirst have been destroyed. PVS patients do retain reflexes such as random eye or muscle movements, yawning and response to touch or sound. However, they do not feel pain. This diagnosis can include patients with the appearance of wakefulness, but excludes those who are more deeply comatose with eyes closed.

Generally, PVS is not considered a terminal condition, and a PVS patient may live for years with the assistance of medical equipment and treatment, and artificial nutrition and hydration.

An irreversible coma is a sleeplike, eyes closed, condition resulting from impairment of the brain stem. This term is often used to include all possible degrees of impaired consciousness or unresponsiveness with the absence of eye opening. It’s helpful to discuss with your doctor when a coma will be considered “irreversible.” That determination may not always be clear cut.  It depends on the person’s age and the reason for the coma. A majority of comatose adults who do not show signs of recovery at the end of a month are unlikely to recover at all. Some people want certain treatments stopped or withheld if they don’t regain consciousness within a certain time period.

Some patients are conscious, but unable to communicate. They may have a serious condition that affects their quality of life and ability to communicate their health-care decisions. For example, the patient may have advanced Alzheimer’s disease or significant physical deterioration following a major stroke. There may be a drug-induced inability to communicate such as that experienced by patients receiving extremely strong pain medication.

Lastly, of course, there is the near-death condition. Many advanced directives speak of the doctor’s advice that death is imminent. In these cases, the patient may be dying soon even with aggressive treatment.

Advance directive is a generic term for legal documents, such as a health-care power of attorney or a living will that indicate your preferences for medical treatment in the event you become unable to make your own decisions, and that designate the person of your choice to make health-care decisions for you if you are incapacitated.

Much of the information in today’s column is from a pamphlet published by the AARP Foundation titled Planning for Incapacity:  A Self-Help Guide. You can order the pamphlet at www.aarp.org. Other resources on this topic include the online version of A Handbook for Mortals by “Americans for Better Care of the Dying,” www.abcd-caring.org. Additionally, Compassion and Choices is an organization that provides information on end of life issues, at www.compassionindying.org.

Thank you for reading. Stay well. See you next week