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The first “wish” is simply a health care proxy form, with the same purpose as a stand-alone health proxy (to designate a specific person to make decisions for you when you cannot). The second wish covers details of medical treatment. For instance, you choose which life-support efforts you wish or decline, and then select a wording that expresses how you want life-support to be applied in three scenarios: close to death, in a coma, and permanent/severe brain damage. In addition, you are prompted to write instructions for other circumstances, such as if your medical condition deteriorates such that you will not be able to care for yourself physically or mentally.
The additional wishes, though not legally binding, are applauded by both doctors and loved ones as guidance about a very important—and often overlooked—aspect of serious illness: the personal, spiritual, and emotional issues. You describe (often by choosing from printed lists that you can also modify) what comforts you desire (pain relief, bathing, massage, music, favorite or spiritual readings); how you want to be treated in general (whether you want to be touched, have bedside prayer, pictures of loved ones nearby, and so on); whether you would like to die at home; and where you want your body or remains to be placed.
Finally, the Five Wishes suggests items you may want your loved ones to know—things you may not be able to say but wished you had. You can select statements like “I wish to have my family, friends, and others know that I forgive them for when they may have hurt me in my life,” and “I wish for my family and friends to look at my dying as a time of personal growth for everyone, including me.” If those comments seem stilted, make up your own. The point is to get you to think about what you want to convey at your end of life before it’s too late to convey it.
Finding courage and heart in death
You may ask, “What if I made the wrong decision about what I put down in my advance directives?” The best you can do is to be courageous enough to spend some solid, focused time imagining the worst, then make decisions based on who you truly are. It is far better than doing nothing. Then, perhaps more courageously, discuss your desires with loved ones, and especially your health care agent. Give them copies of your documents. They may not agree with your wishes, but it’s your life and your end of life.
Besides, it’s hard to go too wrong with multiple choices like this (from Five Wishes): “If my doctor and another health care professional both decide that I am likely to die within a short period of time [and you can specify what you want “short” to mean], and life-support treatment would only delay the moment of my death: a) I want to have life-support treatment, b) I do not want life-support treatment; if it has been started, I want it stopped, or c) I want to have life-support treatment if my doctor believes it could help, but I want my doctor to stop giving me life-support treatment if it is not helping my health condition or symptoms.”
Down the line, if you know your existing advance directive information no longer speaks your wishes, simply fill out new forms. Be sure to have them witnessed and destroy the old versions. Distribute the new versions and keep the original where it can be easily found.
Once you look into advance directives, you’ll see that it’s a form of empowerment, not a terror. And even though it can be emotionally evocative to imagine yourself in a medical crisis, and to discuss your eventual death with family, doing so now is a gift to yourself as well as your loved ones.
Aging with Dignity (Five Wishes)
(888) 594-7437; www.agingwithdignity.org
Hospice and Palliative Care Association of NY State
(518) 446-1483; www.hpcanys.org
Hospice, Inc., of Dutchess and Ulster counties
(888) 696-2273; www.hospiceinc.org
Living Will Registry
New York State info/forms
“Planning Your Health Care in Advance,” Office of the Attorney General, (518) 474-7330; www.oag.state.ny.us