Foolish Decisions at the End of Life

As a geriatric physician and an old man, myself (I am 75 years old.), I feel constrained to share with my readership some observations I have made over the years concerning end-of-life decisions. I have repeatedly seen terrible decisions made by former patients, their families, and, now, with my friends and peers. As we grow older, we have a tendency to deny that our physical lives are nearly over; and we often find ourselves making unwise decisions that do not prolong life. Sometimes, these bad decisions only prolong death. Very often bad decisions strain the financial and social lives of our survivors to the point that they may even wish we were already deceased. Most of these bad effects can be avoided by looking at our lives realistically, having assurance that Christ has come to take us home with Him, and trusting Him to do it for us. Following are some specific bad decisions about which we should think before we make them, ourselves.

1)I will have my cancer treated with all the radiation and chemotherapy available. Patients need to understand that their doctors are pledged to defend life to the very last ditch. Many of them look at death in their patients as a personal defeat. Some, unfortunately look at advanced cancer as an opportunity to make money from hurting people. (Fortunately, this is probably an unusual situation.) Many doctors are willing to allow patients and their families push them into ill-advised treatment methods, which they know are fruitless and even harmful. This latter group of doctors rationalizes their treatment activities by saying that they are only carrying out the sincere wishes of their patients. And patients, after all, should have sovereignty over their own treatment options. (There is some truth in this attitude.) Far too many doctors are victims of overactive curiosity about new drugs and new treatment options. They want to try every new drug that comes on the market. Unfortunately, many new drugs prove themselves no better than the older, standard drugs with which there are known complications and success rates. Many cancers, however, are only slightly affected by chemotherapy and radiation; and those treatment modalities are often not advisable. Patients should develop the practice of asking the doctors specific questions about survival and side effects of the treatments they are contemplating. Following is a list of questions that patients should ask their physicians:

a)What are the one year and the five year survival rates for my cancer if I accept this treatment? What are the survival rates without this treatment?
b)What are the complications and side effects of this treatment?
c)How long has this treatment been in use?
d)How many times have you, personally, used this treatment?
e)What is the microscopic grade and the anatomical stage of my tumor; and how does that affect my outlook for life expectancy and general life quality?
f)Where can I read about the success and the complications of this treatment?
g)Is this treatment accepted as standard treatment? If not, why not?
h)Do other doctors have recommendations to make about this treatment? Where can I find those recommendations?
i)Does the U.S. Food and Drug Administration recommend this treatment? What about the recommendations of the American Board of Oncology? (Bear in mind that oncologists have a reputation for very aggressive and sometimes ill-advised treatment.) What are the recommendations of the specialty board that is concerned with the organ system giving rise to the cancer that I have? (For instance, the American Board of Urology for cancer of the prostate)
j)What are the alternative forms of treatment available?

Remember that a consultation with a geriatric specialist who has no vested interest in radiation or chemotherapy might yield an unbiased and impartial opinion about these kinds of treatment.

If your doctor feels threatened by the above questions or if he/she reacts defensively or adversely toward them, perhaps you should consider changing doctors. The answer to these questions is a privilege you have as a patient. This is all your business; do not be hesitant to ask these questions.

2)I want every possible treatment modality available used to the uttermost to keep me alive as long as possible. Sometimes patients with incurable diseases and the family members of those patients do not realize that the complications and side effects of some treatment methods do not warrant their use. Two examples of this follow:

a)Chronic hemodialysis (use of the artificial kidney) is often abused as an end-of-life measure because patients believe that it makes life longer and more comfortable. This treatment can certainly make life longer; but the price in symptoms and side effects of the treatment is often not worth it. Patients on this kind of treatment usually live with constant thirst, muscle cramps, nausea, and itching all over the body. They have to submit to 2-3 hour sessions on the artificial kidney twice weekly. The artificial kidney should be used in cases where the patient’s kidneys are expected to recover in the near future and the patient is expected to be able to get off the kidney machine soon. Chronic use in old age for permanent kidney failure is not a good decision. Conditions which should certainly prevent the decision to use chronic hemodialysis are congestive heart failure, advanced dementia, and any other incurable disease that will soon lead to death (such as cancer). It is my opinion that chronic hemodialysis should not be used in patients over the age of 75 years or in anyone else with a life expectancy of less than 3 years.
b)Coronary artery bypass grafting is often used to excess in the elderly to keep the heart working just a little longer. I have seen this procedure used in patients over the age of 90 in the vain hope that it will prolong life significantly. What a dream, if only it were true! Opening the chest to repair arteries to the heart is no small procedure; and in aged patients, it is fruitless. The placement of coronary artery stents, on the other hand, is often effective and useful in the aged. That procedure is quite invasive, but it does not entail much in the way of side effects—it is often effective in producing desirable results. Patients often go home within a day or two.
c)One caveat to remember about desperate, life-sustaining, procedures is that cardiopulmonary resuscitation (CPR) in nursing homes has an almost zero survival rate after 3 months. This fact has been ascertained in repeated studies around the nation. All nursing homes ask patients if they want to be resuscitated in the case of cardiac arrest; and, unfortunately, in many cases, patients will indicate that they want that procedure done. That decision is a mistake when it is made in a nursing home—the procedure is worthless, costly, and often inflicts a lot of pain.

3)I will never turn off life-support machinery being used in the care of my loved one. That would be the same as murder. There is a great difference between pulling the plug on a respirator and actively causing the death of a patient by deadly injection—which is, indeed, murder. We are called on to defend life to the last ditch—unless it involves using extraordinary means. What are “extraordinary means?” Extraordinary means are any treatments that involve advanced medical measures, which are not expected to produce life-giving results in the future. Extraordinary means certainly include the use of respirators in brain-dead patients—respirators can keep these patients “alive” with pulse and blood pressure for years. But—-is that life? I do not believe so. Even the use of feeding tubes inserted through the abdomen or nose may be considered extraordinary means, in my opinion. If those tubes are used to keep a permanently unconscious patient alive indefinitely, I think they should be removed.

We come down to the difficult question of what does it mean to be “alive.” Of course, medical people often use the presence or absence of pulse, blood pressure, and brain waves on an electroencephalogram as criteria to determine whether a patient is alive or dead. Personally, I think that the ability or disability to give and receive love should be strongly considered in the determination of whether a person is alive or dead.

4)I will go to Mexico to obtain the very best and most advanced treatment available. (This decision is almost too ludicrous to even discuss.) There are, along the Mexican border, several unscrupulous and unethical doctors who advertise that they can cure almost anything with treatments that have been outlawed or found ineffective in the United States. They charge high fees for treatments that do no good, at best, and that have dangerous side effects at worst.

I remember one doctor, in particular—-a doctor in Piedras Negras, a small town across the Rio Grande from Eagle Pass, Texas. We, doctors in the southwestern U.S., called him “the bad guy from black rock.” He claimed he could cure arthritis. I noticed that his patients, returning to my practice, appeared from their side effects, to be taking huge doses of cortisone. They came back to me for treatment of their high blood pressure and broken bones apparently caused by osteoporosis—-well known complications of improper cortisone treatment. I called him on the phone one day and asked if he were treating patients with cortisone—-he denied it, saying that he was using only Valium and aspirin. I obtained some of his pills from a patient and had them analyzed at a laboratory in Denver. They were found to consist of the extract of a Mexican yam plant that is the crude material from which cortisone is produced. He was overloading arthritis patients with cortisone—-a well-known toxic form of treatment.

Some of these Mexican border doctors are treating cancer with useless dietary restrictions; another I have heard of is supposedly using stem cells on an out-patient basis to treat chronic lung disease. I know of no chronic lung disease that responds to stem cell treatment, although papers were published as late as 2007 indicating that experimentation with stem cells shows some promise in mice with certain lung diseases. (To be effective, stem cell treatment is one of the most highly technical treatments available. A course of treatment requires weeks to accomplish. To be using it frivolously in an out-patient setting is obviously fraudulent. Furthermore, I seriously doubt that any genuine stem cells are being used in the first place!) Going to Mexico to have advancing disease treated by one of these border doctors is like going to West Africa to have diabetes treated by a witch doctor.

5)I will never go into a nursing home or assisted living home—-those places do no good; and I know patients just go there to die. Of course, people die in nursing homes. They die anyway—-some time and some place; but nursing homes do not hasten their death. Nursing homes make life more comfortable when advanced care is necessary. My mother resisted nursing home placement energetically in her advanced old age. She was having a difficult time caring for her basic needs at home. When she finally entered the nursing home, however, her comment was, “Why did I not do this earlier? It is such a relief to me to be cared for like this!”

6)I will not accept hospice care. It does no good; and they won’t treat my disease, anyway. They will only let me die. Hospice care, on the other hand gives considerable relief to intractable symptoms in advancing, incurable diseases at the end of life. Hospice care avoids unnecessary side effects of useless treatment and relieves pain and suffering in a major way. Hospice care should be enlisted early in the course of advancing, incurable disease. Although it is designed to alleviate symptoms, hospice care does not preclude treatment of the disease present if the treatment can prolong life and relieve symptoms. Hospice care aims to keep patients in their homes where they can be made comfortable by frequent home visits by skillful nurses and home health helpers.

7)I don’t need to make out a will. I’m not that bad off, anyway. Wills are not only necessary for people who are “bad off;” they should be written long before a person even becomes ill. To avoid writing a will makes life miserable for survivors who have worked hard to help a dying patient in his last days. Patients who resist making a will are only denying what is inevitable, i.e., that we all die some day. One of the kindest and most helpful things that we can all do for our survivors is to make out a thoughtful will.

Readers of this blog may think that I am personally in favor of health care rationing. If you think that way, you are right. I believe that health care dollars can be used much more effectively to produce health for the American people without spending thousands of dollars extending the life of 90 year olds for an extra few months.

I would invite you all, especially if you are in the elderly age group to read the following book: Nearing Home: Comforts and Councils for the Aged by William Edward Schenck available from Amazon.com for $27.93 in paperback. This book is not a scientific tome; it is a book for Christian believers; and I think that it presents a philosophy on the subject of death that should be comforting and practical to help us all make better end-of-life decisions.