Have you defined what it means to you to “die well”? If you’re like most of us, the answer is probably “no.” For my husband Bruce, who was diagnosed with terminal cancer, dying well meant he died at home surrounded by his loving family, free of fear and pain.
While most Americans prefer to die at home and have control over their healthcare decisions, this is not the case for many of us. Although 90% of those on Medicare say they want end-of-life care at home, only one-third achieve it. Far too many of us die in hospitals, in pain, isolated from friends and families, often after a long medical struggle with an incurable condition. Family members are left with heart-wrenching tales full of tears, anger, regret, and loneliness.
So what keeps us from dying well?
Fear can prevent us from even thinking about our death, let alone planning for it. Is quality of life more important than quantity? Are you worried you’ll get too aggressive care? Are there kinds of treatment you don’t want? Do you want to spend your last days at home? Even if you’ve formed opinions chances are you haven’t formalized your thoughts and failure to plan ahead will make it difficult, if not impossible, to achieve your end-of-life goals.
It’s not enough to have determined how we want to die. We need to translate our wishes into legal documents. An advance directive states your wishes regarding end-of-life medical care, i.e., what treatments you want and don’t want. A healthcare proxy is a person you appoint to express your wishes and make healthcare decisions for you if you can’t. If you have not chosen someone who understands and shares your goals and values, or who is not strong enough to follow through on them, then your wishes may not be followed.
In the absence of these directives, the default standard of care is “all necessary care” even though among those seniors who have taken the time to spell out for their physicians how they envision their final days, only two percent of respondents requested “all possible care.”
A healthcare directive and appointment of a healthcare proxy is necessary but not sufficient unless they are discussed with one’s physician and included in the patient’s medical record. 80% of people say that if seriously ill they would want to talk to their doctor about wishes for medical treatment toward the end of life yet only 7% report having had this conversation.
Lack of communication between patients, families and providers can cause misunderstandings and the wrong care, especially if family members can’t agree or can’t let go.
Working with you, or your healthcare proxy, your physician will be your advocate within the healthcare system. Some physicians may be uncomfortable letting a patient die without trying everything possible. It is critical that you choose one who will support your end-of-life goals and whose style is compatible with yours. Do you want to have all the details about your condition and treatment and have a say in every decision? Do you want your doctor to give you a best estimation for how long you may live? If your styles are in conflict it will be difficult for you to play the role you want and to feel confident your wishes will be honored.
Not fully understanding your prognosis or failing to act on it can prolong inappropriate treatments. The right physician will help you achieve the death you want by guiding you through the transition from “being sick” and hoping for a cure, to “dying” and hoping for the best possible quality of life in the time remaining.
Even with a supportive family, the right physician and a healthcare directive and healthcare proxy in place, fear of the unknown and resulting anxiety can make your end-of-life experience more difficult. Education will combat that fear and anxiety, leaving you better prepared, calmer and more confident. There are tools available to help you think through and document what you want at end-of-life. There are excellent books that will inform you about the process of dying, palliative treatments that are available and the many services that hospice provides.
With advance planning, an informed understanding of the process of dying, the help of family and friends, and a supportive medical team it is much more likely that you will live fully to the end and achieve the peaceful end-of-life you truly want. The time to take the first step, to plan, is now. It always seems too early, until it’s too late.