Have you thought about what would happen if you got so sick you couldn’t communicate with your doctors? Would you be surprised to hear that thinking about such difficult questions as where you would want the line drawn, between a life worth living and the other kind, can be rewarding?
Peace of mind
Imagine that you have a serious accident and are left unconscious, or you’re in so much pain that you’re heavily sedated. The doctors know what they want to do for you, but they don’t know whether you would agree. They ask your family, but nobody knows because you never talked about this. They take their best guess. You come to, eventually, but you are not happy with the result.
Or, maybe you’re taking care of your elderly father. You’re with him day-to-day and you see him failing fast. The doctors propose one more surgery, but you consider that the risks don’t seem worth taking. You decline the surgery and make your dad comfortable instead. Your brother, though, lives in California and when he last visited, three years ago, dad was fine. Your brother says: “I’m flying in to get this straightened out.” A battle royal ensues, and your father’s last days are filled with strife and conflict.
It’s far better, then, to think about these matters when there’s no emergency. You choose a person whom you trust, to speak for you when you can’t, and you speak to that person while you still can. Your give her the legal muscle to make the tough calls and enforce them. You get the peace of mind that comes with knowing you are in good hands.
Your family gets peace of mind, too. You have done your best to relieve them of the guilt and anxiety they might feel if they have to make life-and-death decisions and they are uncertain about, or they disagree with, your wishes.
Your choice about your passing
Bioethics expert Viki Kind asks: What kind of death would you imagine yourself having? A “peaceful and profound one,” or one where your loved ones are “excluded outside the trauma room, while medical team applies extreme measures. . . . do you see strangers straddling the patient on a bed, pushing on the patient’s chest, while the family waits outside in the waiting room? Or do you see a time with family and friends gathered around the bedside, with words of love being expressed, music being played or prayers being said?”
You can make your wishes known in a carefully crafted legal document. You should do that with an attorney.
Advance directive, durable power of attorney, health-care proxy – aren’t these all just fancy words for a living will?
No. An advance directive or health-care power of attorney should be a comprehensive document that appoints another person to be your health-care agent or proxy. With that authority, your agent can stand in your shoes and speak for you when you can’t. The document is designed for flexibility in unforeseen circumstances that require immediate decision-making.
A living will, on the other hand, is for “pull-the-plug” situations. It is for when death from a terminal condition is imminent, or when you have lost consciousness permanently and are in a persistent vegetative state, such that medical procedures would only postpone the moment of death.
So what’s a DNR order?
A DNR order (“do not resuscitate”) is for emergencies, particularly for people who are critically ill and who do not want drastic interventions like cardiopulmonary resuscitation (CPR).
Why would anyone not want CPR, when it works miracles on TV? Because in real life, CPR works only around 17% of the time and, at that, usually only in heart-attack situations. It can be a violent procedure that can break ribs, collapse lungs, interfere with breathing, and the results still might not avoid brain damage. CPR might be advisable for young, healthy people. It might not be so good for the frail and elderly. A DNR order, when appropriate, will make known the appropriate choice for you.
Do I really need all that paperwork?
Yes. A comprehensive set of documents for health-care decision-making should include an advance directive durable power of attorney, a living will, and a document permitting your family and health-care agents access to your medical information. This is a “HIPAA release,” so-called after the federal privacy statute.
Viki Kind also recommends that you create your own Quality of Life Statement. As she writes, the “problem with most of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard.” Viki has posted hers on her website. It’s actually fun to read. See the link at the end of this article.
Can I change my mind?
Feel free. Things may look different when you’re actually in the situation. Health-care documents are fully revocable, meaning that you can change your mind or dispense with them any time you want to.
Whom should I designate as my agent?
You should know the person very well and they should know you likewise. The person should be brave, someone you can count on, who has the backbone to intercede with the medical team no matter how hard things get.
This is a lot to ask. Sit down with the person and have what’s been called “The Conversation,” where you explore the ins and outs of various medical situations and you become confident that the person fully hears you and is fully willing to take on the solemn responsibility. See the resources at the end of this article for guidance on how to have that talk.
Choose a back-up agent, too, in case your first agent is unable to serve for any reason.
Now I have my documents, should I stash them in my safety-deposit box?
No. You can keep the originals there if you want to, but otherwise, imagine how it is for doctors to hear that a patient has an advance directive but nobody knows where it is. Give a copy to your doctor to keep in your file. Give a copy to your health-care agents. If your health is uncertain, keep a copy at bedside or hang it by magnet to your refrigerator. First responders know to look there.
Now I’ve convinced you . . .
Please call an attorney. An advance-directive document should be about eight pages long, to cover as many contingencies as possible. Moreover, attorneys will look at your situation as a whole and advise you about important financial matters too. But as to health-care concerns, if you’d like to educate yourself before you consult your attorney, here are some resources.
* Atul Gawande, “Being Mortal”
This is a moving hour-long documentary, based on a book of the same name by surgeon and writer Atul Gawande, as he attends to dying people including his own doctor-father.
* Viki Kind’s website
Viki provides comprehensive resources on Quality of Life statements, the pros and cons of CPR, and the importance of pain management, to name only a few.
Her own Quality of Life statement is here.
* The Conversation Project
The “Conversation Project” is dedicated to helping people talk about their wishes for end-of-life care. The website is full of valuable information, interesting stories, and “starter kits” including one expressly designed for people suffering from Alzheimer’s.
* Equip your agents with know-how
Here is a booklet, supplied by the American Bar Association, to guide your agents on how to shoulder their responsibilities.
Now, may you live a long and happy and, when the time comes, may you be assisted by a strong set of powers-of-attorney documents.