THE CHALLENGE OF PLANNING FOR END OF LIFE
Today, things are different. Advance care planning (ACP) and health care directives have arrived on the scene. Today there are laws requiring hospitals to ask patients if they have a health care directive.
However, the laws have not, by themselves, transformed how we deal with EOL decisions. The laws don't require health care providers to take any action beyond anything more than asking the question, “Do you have a health care directive?” If the patient does have a health care directive, they are then asked: “Is it already in the medical center system?” If it is in the system, providers must determine if the documents can quickly be found, and ascertain whether it is a current health care directive or an old one. If the patient does not have a health care directive in the medical center chart, no further action is required by the hospital. The hospital has asked the legally required question, and no further follow-up is required.
This needs to change. This legalistic, formulaic way providers routinely deal with matters of life and death does nothing to stimulate meaningful ACP conversations among families. Having advance directives (ADs) is a start, but having ADs stored in a file at home, or in a safety deposit box, does not substitute for ongoing meaningful conversations about living and dying, hopefully conversations that have taken place far in advance of a medical crisis.
In this chapter I share some ideas, based on my years of practice as a social worker and grief therapist, on how professionals can help facilitate
families to have conversations that matter. This chapter isn't about “The 5, 10, 20, or 25 questions health care professionals should always ask patients and families with whom they work.” Rather, it's about the stories—each family's story—and how that influences how they will cope with illness, crisis, and death.
OUR EVOLVING FAMILY STORIES
I have been married to the same person for over 36 years. We met hitchhiking in Australia and have had deep, intense discussions over the years. Like other couples and families, our discussions always start out hoping “the day of needing to use our health care directives will be in the far future.”
In our early years my wife and I bought a home that needed some fixing up. We agreed we would replace the wallpaper in the kitchen with new wallpaper. We thought: just head to a local home center, run in, and quickly agree on the wallpaper we want to buy.
Yikes, our “perfect relationship” underwent a bit of emotional bantering for a while until we finally came to an agreement on what we really wanted for our kitchen. What does it mean to appreciate where the other person is coming from when she says, “This is what I would like to have!” It was only wallpaper, but it generated within each of us a passion for what we thought we wanted and for what each of us thought was good, for not only ourselves, but also for the other.
Conversations about EOL and ACP choices do not need to be postponed until they are initiated in a medical setting. Why wait until the crisis happens? As individuals, and professionals, can you open the dialogue within your own family? Can you also think of having the conversation that matters over and over again? Can you engage in ongoing communication about EOL care and ACP with your loved ones and with your patients?
Conversations about EOL are not one-time events. They evolve. Communication about EOL care and ACP evolve as we grow older. Conversations about EOL care and ACP evolve as each of us define and redefine the values that give meaning to our quality of life. Take a moment to consider what values were important to you when you were 18, 20, or 25 years of age. Are those same values important for you today, or have you redefined what is important to you now? Have you had important discussions, conversations that matter, with your loved ones? Or have the topics of EOL care and ACP felt to be too difficult to discuss? Have you discussed with anyone your EOL care and ACP, and the values and desires you would want to guide them, including those who mean the most to you? Or have you avoided the conversations that matter most?
As happened for my father and my family, life can and does change in an instant. Being prepared, having things discussed far in advance of a
crisis, provides for earlier opportunities to share our values and prepare those we love to represent us clearly.