I'm often surprised by the ability of the human mind to deny things that make us uncomfortable. Every one of us knows that we are going to die someday yet the majority of people die without a will. A lawyer friend of mine recently told me that he had just visited a client in the hospital to complete a will and estate planning paperwork. This client was 87 years old and waited until he was very sick and in the hospital to create a will. I'm sure any lawyer would tell you that quickly signing papers from a hospital bed is not the best way to make these plans. The time to make these critical decisions is long before one is sick. We generally think that end of life issues are only for the old and who wants to admit they are getting old? It's natural to want to put it off. The problem is you can jeopardize your well being and make things far more difficult and expensive for your family when you wait.
One of the reasons people fail to take the appropriate legal steps they need to protect themselves is they don't think it is necessary. A friend of mine is a newlywed and her husband has some ongoing major health issues. She thought she did not need any legal documents in order to make medical decisions on her husband's behalf since they are married. I shared with her my experiences with these legal issues and told her to "run, not walk" to a good lawyer.
When my husband and I were first married we created wills and advanced directives, which are forms authorizing each other to make medical decisions on the other's behalf. We found forms online and filled them out ourselves, and when he became sick I thought we were legally covered. Whenever he was admitted into the hospital I gave them a copy of his advanced directives. Then when we found out his cancer had spread and he was considered terminally ill I contacted a lawyer to make sure everything was in order. To my surprise I found out our wills were not valid because they were written and signed when we lived in another state. I also learned that in California I needed to have a Durable Power of Attorney form which would allow me to make medical and all legal decisions on his behalf if he became incapacitated and could not make decisions for himself. Additionally, the lawyer recommended that I use a California-specific advanced directives form. In all the times he was admitted to the hospital no one ever mentioned that it was the wrong form for California. You can't rely on anyone other than a lawyer to let you know if you have the right forms. We really thought we had all of our legal bases covered and found out we didn't.
Obviously the first and most important step everyone should take is to contact a lawyer in order to make sure you have the correct legal documents you need. This usually involves a will, medical advanced directives, and power of attorney. These forms vary from state to state and it really is worth the money it will cost to make sure everything is executed correctly. Once you have done this you can breathe a bit easier knowing that things are in order. However, this is not the only step to take.
When my husband's illness reached the end stages a friend took me aside to ask if I had appropriate legal paperwork. I assured her everything was set after meeting with our attorney. She told me having the legal right to make decisions for him was not enough, I needed to understand when and how to make the best decisions for him. Then she told me the story of an elderly relative of hers. This woman was 90 years old and starting to develop signs of dementia. She was sick in bed for several days so her adult daughter had her taken to the hospital where they discovered she had a urinary tract infection. She was given antibiotics and it cleared up quickly. They also discovered her dementia and she was placed in an Alzheimer's care facility where she lived two years longer in rather unhappy circumstances. The daughter deeply regretted having her mother treated for the urinary tract infection, as she felt that would have been a relatively painless and easy way for her mother to die. She could have been at home and made comfortable instead of being in a "facility", away from her family. Typically when we think of end of life care we imagine it will be a question of being on a ventilator or other major life support systems. While that is a possibility, it also could be the choice between prescribing simple antibiotics or electing not to have a surgery or maintenance medication. It is often not a dramatic choice but a simple one that can have a huge impact on the patient's care and quality of life.
This is why I strongly recommend after meeting with a lawyer you meet with an "Advanced Care Planning Specialist". These are individuals who are highly trained in clinical matters and can help guide you through the process of determining for yourself the best options for care. They are often social workers or nurses who have additional training and special certifications to help advise individuals and families with these complicated issues. An Advanced Care Planning Specialist can help you determine how to communicate your wishes appropriately for these more complex questions. Many medical advocacy agencies have an Advanced Care Planning Specialist on staff, as well as home health agencies. Your physician's office or local hospital will also often be able to connect you with one.
No one likes to think about these things. It is uncomfortable and scary to imagine having to make these difficult choices. The reality is you will likely face these choices at some point. Some of us are lucky enough to live a long life without major health issues and die quietly at home in our sleep of natural causes, but we can't count on that happening. So being prepared for a less pleasant scenario is the kindest and most loving thing you can do for yourself and your loved ones.