"Please stop saying, 'it's all up to me!'" Can safeguarding freedom be overdone?
Bright never did figure out which came first. Does the high blood pressure cause the kidneys to fail? Or does failure of the kidneys cause the malignant hypertension?
No matter. Whatever the proximate cause, little could be done for Bright's disease. There were no renal dialysis units, no kidney transplants. Imagine if you will ... there were not even easy to take miracle pills that extend life by controlling blood pressure.
Little more was known about Bright's disease, and still little could be done for it, when Joan's father died of the condition in 1954, at age 45.
Joan, age 74, definitely is her father's daughter in many ways. She has his DNA, right down to being kept alive for many years by antihypertensive medication, then learning last year that she had developed end stage renal disease (ESRD), basically Bright's disease.
Joan faced a choice that her father never had to face. Is not miracle medical technology a two-edged sword? Joan could either become a renal dialysis patient, or accept hospice care and let nature take its course. Offering any other choice would be offering up false hope.
With the help of brochures and videotapes, doctors and nurses explained to Joan the potential full life of a dialysis patient, and also the complications and frustrations she might encounter.
Everyone, including Joan's husband, assured her that no one was trying to push her one way or the other. This is your life, Joan. Whatever you decide will be right for you and fine with us. Keep in mind, though, your kidneys are failing fast. You must decide soon.
Joan asked to meet with Dr. Wilson, her trusted primary physician. Dr. Wilson again assured Joan, "Remember, this decision is up to you." With pent up frustration and some anger Joan blurted out, "I just wish everybody would stop saying this is all up to me!"
Making hard decisions
Doctors and nurses are not yet truly skilled at helping patients participate in the clinical decision making process. We are good at providing and interpreting information, yes. But good at helping the patient process the information in the light of their own wishes? No, not unless we choose to specialize in that area.
We can be forgiven for this shortcoming because, after all, we have only had about 30 years' experience with including the patient as a member of his or her own care team. Before that, for two millennia, doctors actually vowed not to be swayed by input from others.
"I will follow that system or regimen which, according to my ability and judgment, I consider for the benefit of my patients." (1)
Originally intended as noble acceptance of professional responsibility, the pledge now is recognized as stating, "I am the decider." Indeed, until the 1970s a patient who dared make a suggestion or question the doctor might be asked, "When did you go to medical school?" No wonder there are so many "the doctor thinks he's God" jokes.
Two developments forced patients to become participants in their own care. One, obviously, is the information age. Today's physician is less a provider of medical information than a trusted interpreter of resources the patient finds on the Internet. If a patient is capable of understanding and processing accurate clinical information, then the old dictatorial model patient/physician relationship has no place.
The other relevant recent development, especially in the United States, is a freedom fetish. Several aggressive groups have given a whole new meaning to the phrase, "certain inalienable rights." Activists have insisted on predominance of civil rights, women's rights, and students' rights. Patients' rights, including the right to die, are sometimes included as part of this self-righteous era.
In this extreme environment, there is a danger that the right to choose might be interpreted as a mandate to choose. It is not. Some patients are more comfortable with their physician's judgment than with their own.
That fact must be built into policies intended to assure patients the right to know what their doctors are thinking, to ask questions and get good answers, and to refuse unwanted care.
The problem is not that a needed pendulum swing occurred. That is, certainly doctors needed to become aware that doing what the doctor thinks is best imposes more than presumably superior clinical knowledge and experience on the patient. It also imposes the doctor's way of thinking.
And one traditional belief of the medical mind is that available medical technology should always be used, whether the patient wants it used or not. Better that a patient be able to say, "I don't want my leg amputated because I have lived long enough and I want to die with my body intact." (2)
A foolish choice? To you, maybe. But not to the patient.
Truly sensitive and professionally acting physicians do far more than write prescriptions and perform invasive procedures. Among other things, they welcome the challenge of influencing the way patients handle life's most momentous decisions.
In this context, "influence" means helping a patient interpret clinical information in a way that truly and accurately reflects the patient's own lifestyle, personal beliefs, and emotional needs. Eric Cassell suggests that this role requires us to "understand how one person helps another make decisions." (3)
Dialysis or not?
You can undoubtedly improve upon the following example of what I am trying to say. The example is based partly on my experience as a clinician, and loosely on the good response of Dr. Wilson and the nephrology team to Joan's frustrated outburst:
"We wish there were a choice we could make together that would cure you. There is no such choice. Do you doubt that this is true?"
(Do not rush on. Let the patient arrive at your level of certainty, however long that takes. Then ...)
"The choice we must make is whether to refer you to hospice or start renal dialysis. Without dialysis, the expectation is that you would die in a few weeks."
(Don't use euphemisms. Say "you would die ..." Even such a well known phrase as "nature will take its course" might not be properly understood in this situation).
"However, we cannot honestly tell you that always happens. Art Buchwald ... you know ... the funny columnist ... chose not to have dialysis, and lived on for eight months, during which time he wrote another book. (4)
"Frankly, we probably cannot hide the fact that we hope you give dialysis a try. Because that choice keeps your options open. If you discover that life on dialysis is no life at all, you can discontinue dialysis anytime you want to, no questions asked.
On the other hand, choosing to die now is a blind end. You and your family will never know what dialysis might have done for you. May I ask you a few questions now, to see if I have made the situation clear to you?"
A patient may ask, "What would you do?"
The most honest answer is, "I have no idea because none of us can truly understand what you are going through." Then (if this is true) ... "But knowing what I know about what many dialysis patients can do, I sure wouldn't try to pick a good day to die. I would keep focusing on living."
We all have to handle our own discomfort with such situations. I admit a bias with respect to answering, "What would you do?" I am not sure we should be completely honest if our true feeling is, "I wouldn't be a dialysis patient for the world. Always the threat of bleeding or infection ..."
I want the patient to understand as much of the positive side of possible interventions as we can convey. God knows we have plenty of experience conveying the negatives.
This difficult task cannot be totally left to a team of educators, by the way. The patient's own doctor must participate. In spite of modern medical miracles and amazing change, some things remain the same. Many patients truly listen only to their own, trusted primary physician.
So, at the bottom line, how much autonomy is enough? Still looking for absolute, universally applicable answers, are you? Sorry, that's not the way clinical medicine works. The answer varies from patient to patient.
Your only choice is to slow down and take time to know the patient and give the patient a chance to know you. Along the way, if you are alert, you will learn how much freedom of choice this patient wants.
P.S. Joan chose hemodialysis. Six months later she attended the wedding of one of her granddaughters.
1. Thompson RE. I Swear By Apollo: The Hippocratic Oath is Obsolete. The Physician Executive. (30)2, March/April, 2004.
2. Appelbaum PS. Assessment of Patients' Competence to Consent to Treatment. NEJM 357:1834-1840. November 1, 2007.
3. Cassell EJ. Unanswered Questions: Bioethics and Human Relationships. Hastings Center Report 37:5 September October 2007.
4. Buchwald A. Too Soon To Say Goodbye. Random House Publishing Group. New York. 2006.
Richard Thompson MD
Thompson is former vice president of the Illinois Hospital Association, he taught ethics at St. Petersburg College and Missouri State University, and is author of Think Before You Believe, Xlibris, 2005. He can be reached at email@example.com.
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|Title Annotation:||Ethical Aspects|
|Date:||Jan 1, 2008|
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