“It’s a good thing your dad died quickly,” Alice told her son. “He wasn’t stuck on those machines like a vegetable. I don’t want that either. Pull the plug, you hear?”This is not a sweet "Hallmark" moment, but it does let you know this woman's basic wish concerning life-sustaining measures. More effective--and carrying legal force--is a document called Advance Medical Directives (AMD). Along with the Durable Power of Attorney, the AMD is an important tool in information gathering and in caregiving.
What Are Advance Medical Directives?
Each person has the right to accept or refuse medical treatment. Advance Medical Directives, or simply Advance Directives, protect that right if a person ever becomes mentally or physically unable to communicate his wishes due to serious illness or injury.
The Advance Directives state clearly what life-sustaining measures a person wishes the doctors and nurses to take on his behalf. The Directives:
• Protect a person in extreme conditions such as brain damage, permanent coma or terminal illness when he is unable to communicate; and
• Limit life-prolonging measures when there is little or no chance of recovery.
In most states, law now requires that a statement of Advance Directives be on file for each resident or patient in a hospital or nursing home. Also, each state may use a different document, such as a living will, a medical/durable power of attorney or a general statement. Consult legal counsel in the state in which the Advance Directives will be used.
What Types of Decisions Might You, As Caregiver, Need To Make?
The woman’s off-handed comment above to “pull the plug” actually may mean making a number of decisions concerning:
- The use of Cardiopulmonary Resuscitation (CPR) to revive her;
- The use of a respirator (a machine to mechanically work her lungs) to keep her breathing;
- When and if to treat infections that, if untreated, would shorten her life;
- The use of feeding tubes to provide nutrition if she could not eat normally;
- Providing appropriate pain relief;
- When and if to use dialysis to clean her blood by machine if her kidneys no longer functioned; and
- Organ donation (specific organs or entire body).
For each of these situations, the health professionals will look to you, as caregiver and decision maker, as well as the AMD for guidance if your parent is unable to express her own wishes.
Perhaps, due to current circumstances, you feel that you won’t have to make these decisions for your parent, but life happens, circumstances change, and you may find yourself responsible for important emergency or end-of-life decisions. Prepare now.
Know What Each Procedure Involves
Each of the life-sustaining measures noted above has many variations and intensities of treatment. While making decisions and preparing the Advance Directives, if you are unfamiliar with a procedure or don't understand the language describing the procedure, consult a physician before completing the Directives.
Implications
According to a recent study, only 27 percent of adults have Advance Directives in place. This means that most people, when faced with end-of-life decisions, have no guidance, may be guessing about the patient's wishes and may decide based on their own preferences, not those of the patient. Take the guesswork out--for you and your parent--by having Advance Medical Directives in place. In other studies, stress levels for the family making end-of-life decisions were significantly reduced when Advance Directives were in place. The family could concentrate on the person's quality of life and be guided by her own wishes in the decision to stop life-sustaining treatments. Suffering is not needlessly prolonged. There is less agonizing over a decision; your parent has already told you, in writing, what to do.
This is one of the most powerful ways you can honor your parent. Honor her wishes on the manner in which she wants to live and die.
Do Not Hurry
Because numerous procedures and treatments are discussed in the AMD, be prepared to spend some time compiling this document. You or your parent may not be writing the document yourself (although you can), but deciding what options would be best under what circumstances may take some time. If you are helping your parent with decisions and information, the discussions may carry over several sessions. Do not hurry the process; these are some of the most important decisions your parent--and you--will ever make.
In my next regular post, I'll provide more tips and suggestions for the Advance Medical Directives. Until then, Blessings on your caregiving day!