Advance care planning is all about being prepared and taking control. In case you can’t speak for yourself eg. after a stroke or near-fatal accident. Advance directives are legal documents that make your wishes known. People tend to put off talking about what they do and don’t want at end of life. Because it is such a difficult conversation to have. If you haven’t had this difficult conversation, your loved ones will be asked to try to guess what you would want. Having to take a loved-one off life support can cause families great suffering and sometimes tears families apart if they disagree about what should be done. In the case of Terri Schiavo who had been in a vegetative state and artificially fed, her husband disagreed with her parents about what she would have wanted. When this happens, sometimes the courts have to decide what should be done.
We know that 77% of West Virginians want to be cared for at home if they have a serious illness. However, 70% of those surveyed have not yet spoken to their health provider about their wishes www.wvendoflife.org.
April 16th is National Healthcare Decisions Day. Around this time, people are encouraged to have conversations with their family. They can also complete formal advance directives, such as a Medical Power of Attorney and Living Will.
Conversations are even more important than the forms and it is better to have them long before a medical crisis. What are your values? Would you want to live as long as possible, even if this meant being maintained on machines; living in a nursing facility; or being in a vegetative state?
Every individual will make different decisions about this. However, we know that many would rather “allow a natural death” at home. Many West Virginians say that they don’t want to be hooked up to machines if they can’t recover. A living will is a formal document that outlines your wishes to forgo these heroic measures in a hopeless situation. A doctor must write a “do-not-resuscitate” order for the health care team to honor the living will. The term “allow a natural death” has been proposed as a better way of saying “do-not-resuscitate.” Because with all the technology we have that can keep people alive, it has become very difficult to allow a natural death.
A natural death can be gentle and peaceful. For those who want to be at home and to die comfortably, hospice is a great choice. Hospices can also help people complete advance directives and provide you with more resources.
In West Virginia, those with a serious illness and limited life expectancy may be asked to complete a Physician’s Order for Scope of Treatment (POST) form. This form is pink and can be updated as people transition from one setting to another. Palliative Care teams can help you with this.
Resources for advance care planning can be found at www.wvendoflife.org and at the National Hospice and Palliative Care Organization’s “Caring Info” website, www.caringinfo.org and https://theconversationproject.org. The Conversation Project also has a Facebook page.
West Virginia has made a lot of progress and leads other states in the completion of advance directives, but we need to reach more people. Have the conversation with your family now and make sure your doctor knows your values and preferences. As the theme for the National Healthcare Decisions Day states, “It’s always too early until it’s too late.”