I knew little about advance directives as I drove to a public presentation on the topic at Benedictine Hospital in Kingston a few months back. I recalled my parents mentioning forms they had filled out, suggesting I do the same. Something about putting in writing the medical procedures I would want, and not want, if I had a health crisis. But I hadn’t taken any tangible steps to do so, nor spent more than a few minutes envisioning medical details I might face “one day.”
Thanks to that superb presentation, I have done a 180-degree turnaround regarding advance directives, from a noncommittal “I guess I should” to an exigent “This is one of the most important things anyone can do! Tell everybody!” Hopefully, by the time you’ve finished reading, you will feel the same—and take action.
The unwanted scenario
A near-drowning, a car crash, or a sudden heart attack are situations where jump-starting a life makes sense. And medical interventions that sustain life, such as artificial nourishment and a ventilator, can avert death during a critical recovery period. Most of us are blessed to have access to the latest life-saving or life-sustaining interventions. But we’ve seen in the headlines how this can go awry. A patient slips into a coma that lasts for months or years, and continues to register brain activity but cannot sustain any other mortal function without assistance. A battle ensues over continuing or ending life support, rending family ties and turning a patient’s fate over to lawyers, judges, and, perhaps, the president of the United States.
A different scenario happens far more often: An elderly person or someone in late stages of a terminal illness has a crisis. Perhaps an elder, with a heart that is still keeping her going—but barely—passes out at home for the third time that year. Loved ones call 911 and she is rushed to the hospital. Standard medical interventions are set into motion to revive and sustain her as soon as the ambulance arrives and are continued at the hospital, no matter the physical, emotional, spiritual, (and financial) implications.
Medical care providers must do so these things unless specifically refused by a patient who is conscious and deemed of sound mind—or unless a legal document states that the patient wishes to decline certain medical interventions. Indeed, a hospital and medical staff risk being sued if they don’t try everything.
Opportunity of a lifetime
“We all have a terminal event,” says Kristin Swanson with gentle humor, meaning death. An organizer of the advance directives event at Benedictine Hospital, Swanson’s many years with Hospice Inc. give her a perspective many of us don’t have. She helps people plan the transition from life to death, instead of going in a powerless tangle of medical equipment and fear. “How your dying experience will go is up to you. But being in the middle of a life-altering illness is not the time to make the decisions.” And what if you’re not on death’s door, but the victim of a sudden accident and arrive unconscious, unable to participate in medical-care decisions?
This is where advance directives come in. They are legal documents that communicate your wishes when you cannot indicate them yourself. Medical advance directives are those that have medical or end-of-life implications (in contrast to certain “power of attorney” documents applicable to nonmedical matters). Three medical advance directives you should know are the DNR (do not resuscitate) order, the health care proxy, and the living will. Terminology for these can vary from state to state, somewhat complicating matters.
Each document has a different purpose. Once you have filled out the ones you wish to complete, distribute copies to your doctor and a handful of loved ones. They won’t do any good stashed secretly away. There is even an Internet service, the Living Will Registry, which provides online access to your documents by medical personnel.
Do not resuscitate order
The simplest advance directive, a DNR order, states your desire not to have cardiopulmonary resuscitation (CPR). Why would you decline these efforts to get your heart or breathing going? When a terminal illness is ever worsening, or you are near death, you may wish heart or respiratory failure to escort you across the life-to-death threshold. Note that you will need two DNR order forms, one for hospital care and one for EMTs. An EMT’s fundamental goal is to deliver a living human to the emergency room, so they will initiate CPR and other life-saving strategies.
Health care proxy
A health care proxy (or “durable power of attorney for healthcare”) is a document that appoints a single person (not a pair or a committee!) to make decisions for you when you are too ill or impaired, including mentally, to do so. That person will become your “health care agent” (or “patient advocate”). Health care providers must contact your agent and follow the decisions of that person as though they were your own. Wallet-sized versions are available, with room for special instructions and organ donation information, so that it would be among your personal effects in an emergency.
If the idea of having someone make medical decisions for you raises some worries, be assured that:
• A health care agent begins to make decisions for you only when your doctor affirms that you are not able to do so (for physical or mental reasons).
• Your agent can act temporarily, such as when a decision about the course of your surgery must be made, but you regain the right to represent yourself as soon as a doctor deems you able.
• Your agent is legally required to follow your wishes, including moral and religious beliefs, and to act in your (and no other person’s) best interests.
• You can limit your agent’s authority. For instance, you can stipulate he or she can authorize a blood transfusion, but not authorize an organ transplant.
• An agent cannot decide about artificial nutrition and hydration unless you have specifically indicated your wishes about that (if not, medical specialists will decide).
• If a doctor deems you physically and mentally competent to make decisions, you may do so even if they differ from what you told your health care agent.
• A divorce or legal separation nullifies a spouse as agent, unless you request in writing he or she continues as such.
• Your agent cannot be sued for health care decisions made in good faith.
In New York State, anyone over age 18 may appoint an agent by filling out a health care proxy. Similarly, your agent may be anyone over age 18 (but not your doctor or other healthcare provider). You may designate an alternate if your first choice cannot make decisions for you for any reason. It’s best to choose someone who lives reasonably close by. Be sure the person you designate agrees to do so, and talk honestly with them about your wishes. Keep in mind that a loved one or dear friend may not be the best choice; in the midst of distress about your condition, making decisions or carrying out wishes they disagree with could devastate them emotionally.
The living will
A living will is your chance to express details about your healthcare preferences (beyond a DNR order). You can—and should—have this document whether or not you want to appoint a health care agent. Medical personnel (and your agent, if you have one) will use it to guide their actions. The living will specifies what kinds of medical interventions you want and don’t want, under what circumstances you want them made or not made, and for how long. Do you want to be on life support for years if you are in a coma? Do you want nutrition but not breathing assistance? What about implanted medical devices, organ removal and transplant, blood transfusion, medications to keep you in a coma during recovery, and a host of other offerings of modern medicine?
How can you know what to ask for or decline? Fortunately, there are organizations, public lectures, videos, websites, and documents to help you. Five Wishes is a good place to start.
Five Wishes is an eight-page form from the national nonprofit, Aging with Dignity. This document has been accepted by 38 states, including New York, as meeting the legal requirements for a living will. It was created by Jim Towey, who learned, during his dozen years of assisting Mother Teresa with seriously or terminally ill people, that families often aren’t prepared to make medical decisions for a loved one.
Five Wishes comes not just as a blank form but in a user-friendly booklet that guides you through making those decisions. It even provides multiple-choice questions and lists of statements to agree with, decline, or modify to your liking. (The form is $5 online.) The Benedictine Hospital’s presentation included an excellent video about this, provided by Aging with Dignity.
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