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.
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 Terri Schiavo case shows the depths of disagreements loved ones can have. Michael Schiavo, Terri’s husband, 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 religious 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 Shiavo died.
Even when there’s no dispute among family members there can still be problems having a patient’s wishes known, such as in the Nancy Cruzan case. Cruzan, like Shiavo, 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 there wasn’t a living will and Cruzan was unable to speak for herself, her legal default was she’d want all life sustaining treatment. Nancy Cruzan’s 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 and 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 OK 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. Advance directives take a good deal of deep consideration. You do yourself a favor; you give yourself time to make these decisions. 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.
- Look at the experiences of others: 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 concept of death. Drawing on the experience of those who are gravely ill can help a person answer these questions. Ask oneself, “If I were in a persistent vegetative state, like Nancy Cruzan, and my family had done multiple tests and the doctors tell 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 feelings 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 Copies: 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.
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