A previous column noted that it's a good idea to prepare an advance directive that explains what healthcare you do and do not want if you are unable to make your wishes known at some point in the future. For more information about advance directives, see this interactive AARP site: www.aarp.org/relationships/caregiving/info-01-2011/caregiver_map.html.
Part of the process involves naming an advocate or agent -- someone who can discuss your situation with your doctors and make decisions on your behalf -- because it is impractical to try to cover every possible situation in written instructions.
Think that it's obvious who to choose as an agent? Think again! Janet Hafner, secretary of the Community Partnership for Comfort Care of Yavapai County in Prescott, AZ, conducts workshops to help people understand how to plan for care that will take place if they become incapacitated, have a terminal diagnosis, or are near the end of life, and she noted that the question of who to name as an agent is not as straightforward as most people assume.
"Some people put down a name on a form and they never even ask the person if they want to be their surrogate or representative or proxy. Some people choose somebody who is across the world," with the unrealistic expectation that the individual will be at their bedside the minute they are needed.
Why does it matter who you choose as an agent? Besides the fact that circumstances may arise that you hadn't foreseen, sometimes doctors want to continue to try treatments even when they are unlikely to help. Hafner commented, "I understand the difficulty for the medical profession. They are dedicated to one thing: saving lives. And so when you say, 'I don't want this treatment,' they have a hard time because they don't like to lose even one patient. They're not taught how to discuss death with their patients."
Whether you get care consistent with your wishes or not may depend on your agent's ability to communicate well with your doctors.
Hafner advised, "Choose someone you can have the conversation with. Choose someone who is going to be available. Choose someone who can make a decision." When she asks people what characteristics they want their agent to have, "They want someone who can ask good questions. They want someone who can, if they have to, challenge authority. They want a strong person who will see that their wishes are followed. They want someone who really knows them very, very well. They want a fighter -- not someone who fights every step of the way but someone who will say, 'I want her wishes adhered to.'"
In a Washington Post article, Dr. Manoj Jain noted, "We are grossly ill-equipped to handle the dying process." In describing his efforts to talk about death with several patients, he said, "I could have done a better job. These conversations could have occurred weeks and months in advance -- at the time of admission to the hospital or the ICU, or even when the diagnosis of a terminal illness was made. In most places in America, this rarely happens."
Hafner commented, "Some people complete advance directives and then they file them away. They don't tell anyone. They don't discuss it with their doctor. They don't tell their family. You have to be able to communicate with your family and your doctors that you have an advance directive and what it is, so that there are no surprises. That's very, very important."
Hafner suggested that these conversations, in fact, need to take place well before someone is admitted to the hospital or is diagnosed with a terminal illness. Describing the situation many people experience when they are admitted to the hospital, she asked, "How can you make decisions at a time when you can't even think straight? You have so much pain and so much medication is being given to you. It is extremely difficult."
The Community Partnership for Comfort Care of Yavapai County conducts workshops regularly at Yavapai Community College through OLLI (Osher Lifelong Learning Institute) and other venues. These sessions are intended to help people understand, create and communicate about their written advance directives.
The organization conducts workshops ranging from one hour to nine hours spread out over several sessions. The nonprofit group welcomes volunteers who are interested in being trained to help other people address advance planning for medical care.
Hafner noted, "We will meet with any group anywhere in Yavapai County and work with people to get in writing what they want."
For more information, visit their website at www.cpcc-yav.org or call Janet Hafner at 776-8457 or Sarah Crews at 583-4610. Crews is the president of the Community Partnership for Comfort Care of Yavapai County.