Making Educated Medical Decisions
When my father finally became incapacitated, we had to feed him. Sometimes he'd start choking because the muscles that enabled him to swallow properly were weakening. We waited quite a while to get a Do Not Resuscitate (DNR) order. At the time, we had no idea that when you call 911, the team of medics is obligated to try to resuscitate the patient. Once they arrive you cannot ask them to stop in the middle of a procedure if you feel you'd rather just let your loved one go. Without a DNR, my father could have ended up on a ventilator-an issue we hadn't even discussed a family.
Nobody wants to think about death and dying; and even when we have to deal with it, many of us put off investigating issues that come up as someone comes closer to the end of his or her life. Consequently, we make decisions as the need arises, not always with careful forethought. As a result, it's not hard to find yourself forced to live with a decision that was made under stress and without sufficient information.
Please review this section, even if you are not currently facing some of the issues discussed. If you do find yourself needing to make these difficult decisions, you will draw strength from your choice to be informed and prepared.
Excerpts from Peaceful Dying - A Step-by-Step Guide To Preserving Your Dignity, Your Choice, and Your Inner Peace at the End of Life
by Dr. Daniel Tobin
Dr. Tobin piloted the FairCare program for peaceful dying at the V.A. Hospital in Albany, New York. He is also a member of the Board of Directors for Partnership for Caring: America's Voices for the Dying-a national non-profit organization devoted to raising consumer expectations and increasing demand for excellent care at the end of life.
One of the most important things you can do to keep control of your end-of-life situation and make your own dying peaceful is to create documents that spell out what life-prolonging measures you do and don't want taken. In addition, you'll want to identify someone-a proxy-who will speak on your behalf in the event that you're not able to make your wishes known. Communicating your desires to your doctor and your family is also critical to make certain that the wishes you spell out in your documents are followed.
Without written documentation, you are helpless against doctors or family members who don't respect your wishes. I remember too vividly the last days of my grandmother Bobby. I knew Bobby well when I was a child. She was vibrant and full of life. She told me that when her time came, she wanted to go out with no fuss, with no machines keeping her body alive artificially. To her, this was so logical that she assumed everyone else would agree; she trusted that common sense would prevail when she reached her dying.
When she was 78, she began to exhibit the signs of dementia, and within a few years the disease had taken over. She was placed in a nursing home in 1975. She lived there for years in a state of deep confusion, unable to recognize her children and grandchildren. Her condition remained essentially unchanged until one morning when she began to develop labored breathing. Sensing a change in her medical condition, the staff quickly placed her in an ambulance to go to the nearest city hospital emergency room. There, a medical resident recognized her breathing difficulty and immediately placed a tube in her mouth, through her throat, and into her lungs. The tube attached her to an artificial breathing machine called a ventilator. She was then tethered to the machine, with her arms and legs tied to restrain her. This is a common procedure, as patients will attempt to remove breathing tubes, intravenous tubes, and other apparatus in their confusion and pain.
My brother called me, upset with the decision to place this 94-year-old woman on a ventilator. I was shocked. After everything I had seen in my medical career, I could not bear the thought of my grandmother being attached to this machine, restrained and suffering, when I knew it could do her no good. I immediately called my mother and uncle. They didn't feel competent to challenge the medical authorities. "We're letting the doctors do what they think is best," they told me.
I then called Bobby's supervising medical doctor, who explained that when she came to the emergency room there were no advance directives with her, so they were legally obligated to do everything to keep her alive. To get her off the ventilator, Bobby's children would have to file a complicated appeal, which they wouldn't do. My uncle did however, request the hospital not to resuscitate his mother in the future, if she were ever to get off the breathing machine. A hospital nurse documented his request over the phone, although everyone was convinced that Bobby would shortly die. Surprisingly, within several weeks, her breathing difficulty cleared, and she was weaned off the breathing machine and sent back to her nursing home.
Several days later, Bobby's breathing once again slowed down, and the nursing home staff rushed her off to a different hospital's emergency room. My uncle's request had not been placed in Bobby's permanent nursing home chart, so she was once again attached to a breathing machine and tied down.
Bobby had a strong heart, which kept her alive, alone in a strange hospital room, attached to a bunch of machines, for over six and a half months. Finally, mercifully, she died.
When Bobby was well, little was known about written wills and advance directives. Had she fallen ill a few years later, she probably would have documented her wishes. Fortunately, such documents are far more common today.
Advance directives are written instructions placed in two main documents, a living will and a health care proxy. A living will contains future requests regarding me3dical treatment, and a health care proxy assigns someone to make future decisions in case the person becomes unable to do so. I will outline the standard living will, a living will with a don-not-resuscitate order, and a living will that incorporates refusal of other specific treatments.
Creating a living will and health care proxy when you are well is a first step in trying to communicate your choices in medical care. Such documents can help prevent misunderstanding and unwanted medical intervention. Good and frequent communication with your primary physician, who will be managing your medical condition, is crucial here. Your doctor must know you well enough to know how serious you are about your wishes, and you must be very clear with your doctor about which procedures you do and don't want done at different stages of your illness.
Living Will - Standard Form
Living wills, which vary from state to state, address some of the treatments you may want to decline at a specific time in life. By reviewing the sample documents below you can get an idea of the specific treatments listed in a living will as well as the specific terms for implementation of the will. Like most living wills, these samples state that resuscitation or life-prolonging measures may be declined when a person has "an incurable or irreversible mental or physical condition with no reasonable expectation of recovery."
Living Will - Do Not Resuscitate
The language in the sample standard forms is fine as far as it goes. The problem is that it doesn't go far enough. The decision as to when someone has "an incurable and irreversible condition" is currently left to the doctor in charge. That doctor may argue that treatments always offer the possibility, however slim, of curing the disease and reversing dying. So if you're certain at any point that you don't want to prolong your life artificially, you need something stronger than the standard living will. You'll want to upgrade your living will by adding to it a clear statement know as a DNR (do not resuscitate), that you do not want to be resuscitated under any circumstances. This request removes the need for the doctor or anyone else to interpret vague phrasing. It states that you do not want your failing heart restarted with CPR or failed breathing restored with a mechanical breathing machine. This crucial change clearly says that no one is to decide on any treatment other than what you have requested. The doctor does not have to judge what constitutes a curable or irreversible state. (For example, below is a sample nonhospital do-not-resuscitate order currently utilized in the stae of New York).
State of New York
Department of Health
Nonhospital Order Not to Resuscitate (DNR Order)
Person's Name ________________________________________
Date of Birth _________________________________________
Do not resuscitate the person named above.
______________________________ Physician's Signature
______________________________ Print Name
______________________________ License Number
It is the responsibility of the physician to determine, at least every 90 days, whether this order continues to be appropriate, and to indicate this by a note in the person' medical chart. The issuance of a new form is not required, and under the law this order should be considered valid unless it is known that it has been revoked. This order remains vaiid and must be followed, even if it has not been reviewed within the 90-day period.
The DNR request could not be any clearer; once the primary physician enters a DNR order in order in the chart; there is a good chance that it will be respected, even in crisis. It takes planing to prepare such a document and have it entered into your hospital chart. The decision to change your living will to include a DNR requires a great deal of thought. Do-not-resuscitate orders vary from state to state, and they must always be signed by a physician. There is a separate DNR form used for non-hospital situations (for example, if you are dying at home), but each hospital also has it's own DNR form.
Sadly, a DNR isn't foolproof either. Doctors don't always enter these requests into their charts. A 1995 study published in the Journal of the American Medical Association found that nearly half the wishes of all dying patients who asked their doctor4s to issue do-not-resuscitate orders were ignored. This study shocked many people, who began to questions the value of filling out advance directives at all. However, the combination of an advance directive and good communication with your doctor and family makes it far more likely that your wishes will be honored. Even a directive by itself significantly increases your chances of getting the care you want, which is far better than no chance at all.
Living Will - Other Specific Treatments
Other treatments that need to be clarified in a written advance directive, leaving no room for interpretation, are artificial nutrition, artificial hydration, and antibiotic usage. Artificial nutrition means feeding the body through tubes when it can no longer take nutrition orally on its own: the most common method is the place tubes through the nose, down the throat, and into the stomach.
Providing artificial nutrition makes sense when it is directed toward recovery and when there is hope that the person can eventually have the tube removed and eat normally. However, feeding tubes are extremely uncomfortable and make little sense for someone who is ready to accept dying.
A more permanent form of feeding tube is the gastric tube. Unlike the other tubes, which involve no surgery, it's inserted surgically through the abdomen into the stomach. It cannot be removed without another operation. On the surface, this may seem appealing. It isn't nearly as uncomfortable as the tube that's placed down the throat and into the stomach. The person can walk around with a fair degree of comfort. There's the danger of infection that exists in all surgeries, and some discomfort from the operation, but aside from that it isn't very physically painful. So you may want your advance directive to state that you want a gastric tube if you stop being able to eat.
However, it's not always that simple. I've known numerous patients who've had gastric tubes inserted and regretted it later, even though it added several months to their lives. One problem is the quality of life in those months. If you're close enough to death that you stop wanting food, it means that the disease process is ready to play itself out, with all the pain and discomfort that terminal illness usually brings. You may find yourself trading a relatively painless death for a much more uncomfortable one.
More on Gastric Tubes and a Personal Story
But I think the problems with gastric tubes go deeper than that. People tend to choose feeding tubes or other interventions because they want to believe that can defeat death. But deep down they know that can't really do that. They tend to feel that they're in a dreary limbo, not dead but no longer really belonging to life. "Good Time Charlie," one of the patients I worked with at the VA hospital, brought this home to me very clearly. Her had never been counseled about the tube - they told him it was a good idea, he said fine, and he had the surgery. He would walk around, smoking his cigarettes. He made a big ritual of his feeding: whenever he had to feed himself, he paid great attention to preparing the tube. But it wasn't a joyful ritual. He seemed to be constantly brooding. He talked to me several times about the tube. "It just doesn't feel right," he would say. "I'm alive, but I'm not supposed to be alive. I don't feel like I'm living, just like I'm passing time with this thing in me. I wish I hadn't done it." Finally, one day, he just clamped the tube shut and stopped using it. "That's it," he told me. A few days later, he died.
During all my talks with Charlie, I felt strongly that he had been shortchanged. No one had discussed the tube with him in advance. No one had helped him explore how he might feel about prolonging his life in this highly artificial way. Perhaps if someone had done so, he still would have chosen to have the procedure, but at least then he would have been prepared for the terrible hollowness he felt during those last weeks of his life. Or perhaps he would have realized that his own sense of what was natural would be violated by the tube, as ultimately it was.
Of course, Charlie did end up making his own decision; he closed off the tube. But for most people, such an action would be much harder than choosing not to have a feeding tube inserted in the first place. Because it's so much more active, closing the tube seems closer to suicide.
Another intervention is artificial hydration - placing fluids in the body, usually sterile water and sugar solutions through an IV (a small tube inserted into a vein in the arm or neck). Intravenous fluid is routinely used when the body cannot take in enough fluid by mouth. Again, it makes sense when there is hope of recovery. When you're preparing to die, however, intravenous fluids are unnecessary and cause discomfort and agitation. Ice chips, as well as wet washcloths applied to the lips, will help with some of the discomfort of dehydration, but when it is time to die the body does not need much hydration.
This is a crucial point. Loved ones usually misunderstand and think the dying person is suffering terrible pangs of hunger and thirst. People do not starve to death when they stop eating food or die of thirst when they stop drinking water. The body slows down in a very fixed and natural way at the end of life. In most cases, people stop eating and drinking precisely because they feel no more need to do so. They do not suffer pangs of hunger or thirst.
Often, dying people are given antibiotics, medications that fight infection-causing germs (bacteria). They're an excellent tool for people who will recover from their illnesses. But when you're preparing to die in a comfortable setting, antibiotics may not be necessary except to control a painful local infection. Often people who are dying get pneumonia, and nowadays doctors tend to give them antibiotics. In the past, though, pneumonia was known as "the old people's friend," because it brought death in a relatively comfortable way. So again, if you get antibiotics for pneumonia at a very advanced stage in your illness, you might be setting yourself up for a lingering and uncomfortable death later.
You should ask yourself five routine questions when facing an end-of-life situation.
At this point in my life, taking into account my total condition if my bodily functions where to continue slowing down, do I want:
||To be attached to a mechanical breathing machine?
||To have my heart resuscitated with medications and mechanical methods?
||To be fed with a feeding tube?
||To be given fluid hydration with intravenous lines?
||To be given antibiotics?
If you are ready to die and don't want your life prolonged by mechanical breathing machines, nutritional and hydration tubes, drugs and mechanical techniques to reverse heart failure, or antibiotics, you should change your standard living will to a request that does not require interpretation.
You can do this with advance directives in any of the five standard areas. You need to analyze each of these areas, if possible before you're in a hospital setting. Although family members and doctors will all have their own opinions, which are worth listening to, you must ultimately trust your own internal wisdom in making these decisions.
Expressing your wishes doesn't mean you have to decide not to have certain treatments. In some cases, patients and their families have to be adamant about their desire to continue medical care. In Dying at Home, Andrea Sankar tells of one woman whose husband had clearly stated his wishes to be resuscitated if it would save his life. The doctor insisted on withdrawing all treatment, despite the wife's objections. Because she was there and able to fight for what she knew her husband wanted, the doctor gave in and performed the procedure.
That last sentence is crucial. The woman fought for the procedure because her husband had clearly let her know, in advance, that this was what he wanted. This is far different from the more common situation in which family members defy the patient's wish to be free from such interventions. Whatever scenario you choose, you have to let your loved ones know your wishes well in advance, and you have to let them know that you expect them to honor and, if need be, fight for those wishes.
Many variables are involved in thinking through the dying process, but ultimately what you need to decide is whether you want further medical treatment directe4d toward cure, or simply comfort-care therapy, at a given time. Both decisions are equally valid and must be respected.
Remember that an advance directive is never irreversible. For example, if you feel on a given day that you would want to be resuscitated and artificially fed because deep in your heart you still hope there's a chance of recovery or for any other reason, you can change your living will, notifying your family and your health care proxy both in writing and orally. Usually, however, by the time you've done all the preparation and contemplation to become ready for dying, you won't change your decision to focus only on care-based treatment.
Your Health Care Proxy
Another important issue is who will be your health care proxy in the event that you can no longer speak for yourself. You need to choose this person very carefully. It should be someone who understands your philosophy of living and dying and who will be able to accurately translate your wishes about the specifics of your treatment when you're unable to express them yourself. Make certain you choose someone who is willing to take on such a responsibility and who has a forceful enough personality to fight for your wishes. This may be the person who is closest to you, but it may not. Your husband may be very loving and supportive, but not a great fighter. Your wife may agree with your choice intellectually, but have emotional difficulty with it. It may be too difficult for a parent to make a decision not to prolong a beloved child's life.
If the person you choose for your proxy isn't related to you by blood or marriage, you need to be doubly careful to create as legally binding a proxy as possible. Gay and lesbian couples, as well as unmarried heterosexual couples, are especially vulnerable in this area. Such partners have no legal status, and family members are often hostile toward unorthodox relationships. Your family members must respect your choice of proxy, as they must respect all the decisions you make surrounding your dying.
Health Care Proxy Personal Story
A long legal battle that took place in the 1980s and early 1990s illustrates what can happen if you don't have a proxy and your family is hostile toward others in your life. Sharon Kowalski and Karen Thompson were lovers who had lived together for several years when Kowalski was injured in a car accident that left her permanently disabled - she could no longer talk or move. Both she and Thompson wanted to remain together, and Thompson had a house built especially to accommodate Kowalski's disabilities. Kowalski's parents objected because of their disapproval of lesbianism. It took eight years and $220,000 in legal fees before the courts allowed Kowalski to live Thompson. Kowalski had been young and healthy before being suddenly disabled by the accident. With a serious disease, you know the possibilities ahead of time and can prevent a similar situation from occurring to you.