A Common Story
John Smith has an inoperable brain tumor and is showing early signs of dementia.
Five years ago, while in good health, John met with his attorney and signed an Advance Directive, naming his wife, Betty, as his Health Care Agent. In his Directive, John indicated his treatment preferences: if he was in a terminal condition or state of permanent unconsciousness, he wanted his Agent to “allow my natural death to occur.”
John’s physician meets with John and Betty and tells them there is nothing more he can do for John. John has about six months to live, but when his physician asks John whether he wants to be resuscitated if his heart stops, John quickly responds “yes.” What should Betty do?
A few weeks later, John develops pneumonia. John’s physician asks Betty whether he should treat the pneumonia, or just make John comfortable. Again, Betty is not sure what to do. And John’s two children each have different views.
Although this is a fictitious account, most of us have faced or will face similar issues with aging parents or spouses. Having to make such decisions, even pursuant to a Directive, can cause tremendous emotional turmoil for both the Agent and the family, often resulting in delays in making necessary decisions. How are Directives used in such situations, and how can the legal and medical fields assist in the process?
Advance Directives: The Legal Perspective
No estate plan is complete without an Advance Directive. The purpose of a Directive is to allow a client to express his or her wishes with regard to end-of-life care. Often, Directives name an Agent to make medical decisions if the client becomes unable to make his or her own decisions. Most Directives will also allow the client to specify treatment preferences in the event of certain medical conditions, such as a “terminal condition” or a “state of permanent unconsciousness.”
In most cases, the client chooses a treatment preference that provides: “allow my natural death to occur.” What does that mean? In many cases, there is a gap between what the Directive provides and how it should be applied.
Bridging the Gap: A Doctor’s Perspective
As discussed above, Directives frequently fail at the bedside. Besides the limitations of the Directives themselves, often there are family conflicts and even physician conflicts in their application. Studies have shown that a Directive made no impact on issues such as how early DNR orders were issued, physicians’ knowledge of their patients’ CPR preferences, or the use of hospital resources.
The pitfalls in applying Directives include disagreements regarding the definition of “terminal illness” and “natural death.” Making such decisions is highly emotional, which creates a high risk for family conflicts. To complicate the situation further, the Agent may be dealing with his or her own emotions, such as guilt, anticipatory grief, and fear of conflict with other family members.
So what can you do to bridge the gap, to help ensure that your desired end-of-life care wishes are implemented?
1. Agent / Family Education.
You should have a plan for end-of-life care and discuss it with your Agent. If you want a “natural death,” discuss with your Agent what that means. Hold a family meeting, preferably well before any health crisis, so that all family members know what you want.
2. Be Proactive with Your Health Care Team.
Make sure your health care providers have a copy of your Directive, and have read and understand it.
3. Make Sure Your Doctor has the Correct Orders on Your Chart.
Health care providers look at orders, not Directives. Have explicit conversations with your doctor about what you want.
4. Bring Your Spiritual Advisor in Early.
Your spiritual advisor can support your Agent and family during the process.
5. Ask for Palliative Care.
Having a palliative care specialist at the bedside can help support you and your family. Palliative care is a relatively new medical field that involves supporting patient and family choice, ensuring understanding and facilitating communication among the patient, family and healthcare providers.
While Advance Directives are an important component of a complete estate plan, they are only a beginning. Following the suggestions discussed above can help bridge the gap between the Advance Directive and its application in end-of-life care decisions.