Many of us know that living wills are a smart decision, but even with this document in place many find that making medical choices for a loved one is still complicated in practice. This post discusses some of the common problems with living wills and steps that you might be able to take to make sure that your wishes are followed.
The living will document was designed to give the patient the right to determine–ahead of time–the type of medical care desired in the event he or she is unable to communicate those wishes. However, the language commonly used within a living will (which is also referred to as a substantive or instructional advanced directive) tends to be rather vague, often lending itself to interpretation. For example, in this age of advanced medical technology and cutting edge treatments, verbiage such as “little to no chance of recovery” is becoming obsolete.
Some living wills, indeed, spell out possible scenarios and the patient’s desired outcomes for each scenario. While this is helpful, with medical technology evolving at its current rate, listing every alternative is virtually impossible, which then forces medical professionals and/or family members to then determine what’s best for the patient. Making matters even more difficult is the fact that for many what they want changes following an illness or hospitalization. One research study on medical decision-making revealed that three of every 10 patients change their minds about the type of care they desire, but those changes are not often reflected as quickly on the living will.
So then, we’re back to the challenge of interpretation. It’s important to note that even when the patient’s wishes have been clearly written out, family members are still faced with making these decisions at a very emotional time. Arguments often arise between family members in the midst of the crisis about what their loved one really wanted, when their energies would often be better utilized in coming together to support one another as well as the patient.
According to a February 2001 study published in the Archives of Internal Medicine, family members presented with various health crisis scenarios were about 70% accurate in predicting their loved one’s desires if faced with the scenarios given (whether the patient had a living will or not). That’s good news because three out of five patients who have living wills in the first place never give them to their doctors or to family members.
While that fact is baffling to most, it leads directly into the necessity for medical doctors to exercise their professional opinions regarding care that is in the best interest of the patient. Family members must often draw from their knowledge of their loved one’s lifestyle and wishes, perhaps even going back to conversations that happened before a crisis ever arose. Sometimes, though, the decisions made can go directly against the wishes of the patient.
Having a living will does not always negate a medical team’s decision to perform invasive procedures on the terminally ill. And again, family members who are facing difficult decisions are often reluctant to accept a diagnosis of imminent death and will, in some cases, fail to follow the instructions in a living will (hoping for a turnaround).
A number of legal and health care professionals who once championed the idea of each patient having a living will are now suggesting that patients designate a health care advocate. Generally this would be a family member or perhaps a close friend who would exercise what the legal community calls “substituted judgment.” In short, the health care advocate is responsible for making the decision you would make if you were able to. To protect that individual, a patient may even record verbally or write out their wishes, to confirm that the decision made–no matter how difficult–was in accordance with the patient’s desire.
There’s really no way to guarantee that what actually happens during a serious medical situation is what you would have chosen for yourself. But you can increase the chance of receiving the care you desire by communicating with your loved ones, with your doctor, and in writing the outcome you would want.