Completing an advance directive requires asking yourself if you’d like to have a feeding tube or other life support technologies using in the course of your care. Would you want to take advantage of these technologies if it would only postpone death? Would you want to use them if you were permanently unconscious? Would you want them if you were going through an advanced progressive illness?
What Is Life?
None of these are easy questions. Answering them requires figuring out what life means to you. Do you define life by the intake of breath and nutrients? Is it defined by consciousness? At what point do you want to prolong it and at what point do you want to preserve resources for other people? Answers can change with the context of the question—if there was a hypothetical hope of recovery.
Discussing advance directives with loved ones and health care proxies can be difficult. Often people are afraid of discussing anything regarding death and dying and ignore the topic altogether. Many people think their family members will “know what to do when the time comes,” so there’s no reason to make a legal document.
High-Profile Legal Cases
Never is the importance of making an advance directive more apparent than when we look at contentious and high profile advance care wishes legal cases. The case of Terri Schiavo shows the depths of disagreements loved ones can have. Terri’s husband Michael was convinced Terri wouldn’t want to continue life in a persistent vegetative state with little hope of recovery. Terri’s parents, Robert and Mary Schindler, were positive Terri wouldn’t want to be taken off feeding tubes due to her Roman Catholic affiliation. Both parties were absolutely confident they knew Terri’s wishes, but lacking any living will, this bitter dispute carried on over 10 years through multiple court battles. Even after the US Supreme Court denied the Schindlers’ appeal, they were still petitioning to have Terri’s feeding tube reinserted. Their last petition was denied the day before Terri Schiavo died, in 2005.
Even when there’s no dispute among family members there can still be problems having a patient’s wishes known, such as in the case of Nancy Cruzan. Like Schiavo, Cruzan was in a persistent vegetative state after an accident left her without oxygen for a significant amount of time. After four years of waiting for a recovery, her family was ready to let her die. The hospital refused to honor the request without court approval. Because Cruzan did not have a living will and was unable to speak for herself, her legal default was she’d want all life sustaining treatment. Her family needed to present clear and convincing evidence of her wishes to withdraw life sustaining treatment. After multiple judicial attempts, the family’s evidence was enough to grant the order. Cruzan died in 1990.
While these cases are extreme examples, they’re useful in demonstrating the folly in thinking end-of-life decisions will simply turn out okay without planning. Even families who think they know what their loved one wanted will have to face a heart-wrenching battle if they don’t all agree with each other. The most effective means for having your wishes known and respected is to have these difficult discussions and formally complete your advance directive.
Tips for Creating an Advance Directive
Give Yourself Time
Big decisions don’t always come quickly. Completing an advance directive takes a good deal of deep consideration. Don’t expect to be able to complete the form the first time you read the questions. It’s usually more effective to read the questions and take a break to consider the answers before committing them to paper.
Consider Other People’s Experiences
The questions can seem abstract when considering situations you haven’t been in before. Even more so for people who are young, healthy, and have very little understanding of death. Drawing on the experience of those who are gravely ill can help you answer these questions.
Ask yourself, “If I were in a persistent vegetative state, like Nancy Cruzan or Terri Schiavo, and my family had done multiple tests and the doctors told them I have no chance of recovery, what would I like them to do?”
Use whatever example, either real or imaginary, that helps you explore these questions to get a sense of your intentions.
Share Your Views with Loved Ones
While your decisions are your own, it’s important to share your feelings with your loved ones. One of the worst aspects of dealing with death is not knowing what your loved one wanted. To help guide your loved ones in making medical decisions for you if you’re unable, they need to know why you made the decisions you made. Your reasons and intentions are as important as the decisions themselves.
Appoint a Health Care Proxy
Advance directives cover specific end-of-life circumstances and give a sense of your general preferences, but they can’t cover every known contingency. Another important part of end-of-life planning is to appoint a Health Care Proxy also known as durable power of attorney. This gives a trusted friend or loved one the ability to make healthcare decisions for you in the event you can’t make them for yourself. A health care power of attorney should be an advocate who fully understands your values and is willing to accept the responsibility of speaking on your behalf.
Make multiple copies of your advance directive. Give these copies to friends, loved ones, and especially your health care proxy. You can even have your advance directive scanned into your medical chart. The important thing is for your advance directive to be accessible to medical professionals when needed in a time of crisis.
Advance directives can be frightening to those who don’t understand them. Once people understand they’re a means to express wishes, that fear is relieved. These forms don’t take away choice, they express your choices unambiguously. These forms don’t cause family strife, they aim to solve questions before they need to be answered. These questions aren’t difficult, they simply require time and clarity of mind. Drawing from the wealth of your experiences, relying on your core ethical values, the answers reveal themselves. Creating an advance directive is a small amount of work that gives a great amount of value in return.
Life After an Advance Directive
You’ve made an advanced directive and given it to all the important people who need to know—your surrogate, your family, your physician, your hospital. It feels good to have things spelled out so clearly. Now you can stop thinking about that and get on with Other Stuff, right?
Yes and no.
As Drs. Jerome Groopman and Pamela Hartzband point out in their article from the ACP Internist newsletter, the advance directive isn’t the end, it’s the beginning. How you feel about things today is probably not how you’ll feel tomorrow. Things inevitably change, and with them, your perspective on what it means to suffer, to thrive, to live, and to die. What makes sense today may seem inadequate in the face of a newly diagnosed disease, or an unexpected turn for the worse with a chronic problem. Or you may find you have strong opinions that remain steadfast regardless of what comes. But you can’t know unless you check in with the questions now and then, to make sure your answers still fit.
Few people go through even one major or serious medical event in their lives. We tend to have no direct experience with the burdens of a severe illness, nor do we know how we’ll fare when tested beyond our perceived limits of endurance with symptoms we’ve never even imagined before.
Could I tolerate living in one room, unable to go out? How would I cope with frequent surgeries? Would I want to hang on to life if living means relative immobility and dependence on others for every need? And if I know I’ll die within months, do I have different answers for these questions?
In a 2008 study on how people perceive their decisions about advanced directives, researchers found that people who changed their decisions a year after first making them incorrectly believed their new decisions were the same as those they made previously. This suggests that when circumstances or experience prompt us to feel differently about a particular decision, we may simply assume we always felt that way. Unless you go back and revisit your advance directive, you may end up in a situation where your written instructions from an earlier period conflict with what you now wish to do or to avoid.
It’s clear you can’t let yourself off the hook just because you managed one time to work through the conversation, made the hard decisions, and got an advance directive written up and distributed.
Keep Your Advance Directive Up to Date!
Note: This page combines and adapts material authored by Arashi Young and Nora Miller, published on the previous iteration of our website as blog posts.