The past 100 years have seen incredible medical breakthroughs -- from penicillin and the polio vaccine to heart transplants and innovative cancer treatments. All of these have helped people live longer lives than ever before. However, there is still the inevitability that, at some point, we all will die. Death is a subject not many people are comfortable confronting, even as they face it themselves. For many, it is a terrifying prospect with few certainties associated with it aside from that it will happen. And it's something that, quite simply, many people are still unable or unwilling to accept. For this reason, end-of-life care, and the subsequent decisions that are related to it, is a sensitive subject that must be handled with compassion and respect from all involved -- from family members to medical personnel.
End-of-life care issues have especially come to light over the past three decades, with high-profile cases involving advanced care planning and sanctity of life issues. First brought to light with the case of Karen Ann Quinlan in 1975, the issue reached a societal fever pitch in 2005 with Terri Schiavo. In that case, one that eventually involved the U.S. Congress and U.S. Supreme Court, the husband of a woman in a persistent vegetative state wanted to remove her feeding tube, despite her parents' objections. In the end, artificial food and nutrition were removed. Most recently is the case of Jahi McMath, a 13-year-old girl in California whose family refused to take her off life support even after she was declared brain dead resulting from complications following a tonsillectomy. In January, she was transferred to a facility in New York so her physiological function could be maintained.
Despite these high-profile cases of tough end-of-life-care decisions, people are still reluctant to think about their own. A recent survey shows only 26 percent of Americans have an advanced directive as to their care in the event they are unable to make their own decisions. Without a directive in place, the "substituted decision making" that should take place can be difficult. Emotions are often running high and family members may sometimes consider their own feelings or wishes above those of the patient. Very often, families want to prolong life more than the loved one may have wanted. They forget that it's important to remember to not make the decision you want, but the one your loved one would have wanted. When there is uncertainty about whether a family is responding to their personal emotions or making an accurate substituted judgment, a clinical ethics consultation may be helpful.
As is the case throughout our lives, control is very important -- perhaps especially at the end. Very often when end-of-life care becomes an issue, families try to gain control of a situation which is ultimately out of everyone's control -- a disease that is slowly taking their loved ones from them or a sudden accident that has left them in critical condition. But for the patient that is able to actually experience the disease and face the end of his or her life, that control is even more important. And the best way to take back control is by making a decision about some basic approaches to end-of-life care before it becomes a reality.
Here are five things we all need to consider when it comes to end-of-life care:
1. Establish priorities. Determine whether you're the type of person who is most concerned about the quality or sanctity of life. This distinction will help guide your decisions about the end-of-life care you want and it will help you clarify your wishes for your family and medical personnel. Think about where you would like to be in your final days. Some individuals want to die at home and others are more comfortable in a hospital or in a patient hospice environment. Communicate your thoughts to your loved ones and health care provider.
2. Create a durable power of attorney for health care or a living will. This legal paperwork will give you peace of mind, knowing you have spelled out exactly what you would like in that situation or have entrusted someone to carry out your wishes. In some states, such as Ohio, when a patient is terminal, a living will trumps power of attorney, so make sure that your family is aware of your choices so there aren't any surprises at the end.
3. Learn about hospice care. This is an increasingly popular option today for many patients with life-limiting conditions, but often they aren't able to make the decision for themselves. Learning about this option ahead of time could be beneficial, whether you're a patient one day or a family member who has to make the decision for a loved one.
4. Create a healthy bereavement environment. End-of-life situations are stressful and can involve a great deal of tension, deep psychological dynamics, and many challenging feelings. If you are a religious or spiritual person, draw on those resources as a source of strength. While you can, take control and establish parameters as to what you would like that environment to be, from who you would like to be there with you at the end, where you would like to be, even to the type of music you'd like played or poetry read at your funeral service. Taking the time to do so will not only help you in your final days, but also your loved ones as they begin to grieve.
5. Discuss your ethical legacy. One of the things that may help you cope better with the idea of death is thinking about all of the positive, and non-earthly, things you will pass on to your family. Consider creating an ethical will, which passes down your ethical values from one generation to another, as a way to preserve your legacy.
Remember: Your life is a book and you are the author. It's up to you to write that last chapter.