Tuesday, October 26, 2004

Reflections of Autumn - and Cancer

I took a long walk through the crisp forests of Missouri last weekend, marveling at the bronze and yellow-gold giants of autumn. They towered over me, lightly swaying in the October breeze as I tramped along. Fall is especially a poignant time for me, and not just because of the pleasure of scanning the brilliant countryside stained with color. No, this season also reminds me of my profession. It announces the death of summer - the slow transformation of green life into dark, skeletal corpses. This allegory is familiar to the oncologist, who all too often sees the same change in his patients. As I stepped on a vast carpet of fallen oak leaves I continued the metaphor. These leaves, which once shimmered in the blue dome of a hot July afternoon, now rested quietly on the forest floor. Could any cancer specialist not see the obviously painful comparison? What do we do with such a gloomy conceit on a sunny October day?

What I did was to consider my patients, some doing well, some struggling to live, and wondered how many of them would soon, like the scene before them, float downward from life and lie on the shady hillside, joining the limitless pile. I recalled that leaves are delightful when turning color, but once on the ground they are either a nuisance to be raked, or to be crushed by the boot on the way home. They are forever forgotten - who ever remembers on which branch they hung? Upon this reflection, I saw the contrast. The lives of my patients were more memorable than that of these trees. Their lives touched other lives - including mine. To each who was in my care I mouth a promise: "I will not forget you."

My time in the woods is therefore a lovely sorrow, a walk filled with thoughts about the beauty of the afternoon and of the disease that pervades this time of year. I suddenly have a vision of an empty chair placed in the midst of this dense forest, waiting to rest a weary traveler. Many have found an end to their suffering by stopping here. Today I walk on, through the timbers and into the meadows beyond. I know the chair remains in the woods, among the dead leaves. Perhaps someday my journey will lead to it. Until then the work and the daydreams of the oncologist carry on.

Thursday, October 14, 2004

The Cancer Patient's Guide to Informed Consent

We've all heard about the doctor's obligation of educating a patient about the potential benefits and possible risks of a particular operation or procedure. This is called "informed consent", and is usually completed by the patient signing a written form that delineates the pertinent information needed. The process is typically quick and tidy. The cancer patient, however, faces a host of possible side effects and toxicity when starting chemotherapy or biological therapy, and must agree to receive a treatment that almost always comes with no guarantee of success. Not only that, if severe toxicity occurs, the patient already struggling against cancer may die. This seems like a daunting challenge for the oncologist to ensure that the patient and family truly understand what the realistic goals of treatment are, and what the likely adverse effects will be. In fact, it is impossible to anticipate and relay every conceivable complication of a treatment, as some side effects are so idiosyncratic as to be unpredictable.

This fact does not relieve oncologists of the responsibility of providing adequate explanation of the details of any anti-cancer treatment. "So what's the problem?" we ask. "Explanation for us is easy - we've done it hundreds of times." Yes, but listening to informed consent for the first time can be confusing, frightening, and depressing for the patient, especially if the consent talk is disorganized or incomplete. Since our mutual goal is to move forward together to forge the best possible outcome for the cancer patient, it therefore seems appropriate to create a basic guide to informed consent. This brief guide contains helpful questions and subjects that should be covered when receiving informed consent about a potential treatment, whether that treatment is chemotherapy, hormone or biological therapy, or the newer class of agents called targeted therapy. By using this outline, the patient can ensure that the important topics are covered by the oncologist.

These are the highlights of informed consent that should be covered in the counseling session.

The Goals and Limitations of the Treatment: What are the chances of the treatment working? Can my cancer be cured? If not, does treatment prolong life? Will my symptoms improve with treatment? Will the cancer disappear completely - a complete remission? How long does a complete or partial remission last? What will my life be like while on therapy?

What happens when the cancer is found to be growing again? (This is a frequent question, but one that does not always have a straightforward answer, since it involves speculation by the oncologist).

The Risks and Side Effects: the risks that should be discussed include death, hair loss, vomiting, anemia, fever, infection, bleeding, mouth sores, diarrhea, damage to the skin, heart or nerves, allergic reactions and fatigue. This unhappy and only partial list highlights why informed consent is no fun to give nor receive - but it is necessary to prepare for potential future problems. A written list of side effects should be given, and solutions to the side effects should be discussed.

The Logistics of Treatment: How many days per month will I take treatment, and when does the treatment cycle restart? Where will I be treated - in the office or hospital? How long will each treatment last? Who and what should I bring to my office visit? How often will I come to the office in between cycles? Will I need a portacath (an implantable venous access device) for IV access? How much does treatment cost, and what is my personal cost?

Alternatives to the Treatment Recommended: Is this the best treatment available? What other treatments could be used? Are there any new therapies available, or is a clinical trial (research study, often with newer agents) open for my disease?

I realize this list is not comprehensive, but it is a good start for anyone facing the challenge of cancer therapy. By empowering the patient and family to ask these questions, the potential for misunderstanding is reduced and the chance for a more tolerable experience is strengthened. Asking thoughtful questions also brings out the best in every oncologist, as we are eager to share the increasingly hopeful news about the fight to subdue this wretched affliction.

Wednesday, October 06, 2004

How to Get Your Doctor to Listen to You!

Have you ever been diagnosed with a serious illness, or known someone facing such a health crisis? Do you recall how anxious you were to get the true facts about the situation? At such a time we all rely on our doctor to communicate clearly the details of the illness and the plan to treat it. Unfortunately, many doctors possess meager skills in counseling; others are talented speakers but poor listeners, and all doctors are rushed for time. This often leads to an unsatisfying visit.

A patient or caregiver always has the right to ask multiple questions about the diagnosis, prognosis and treatment of an illness - I get asked these questions every day, and have learned to answer them as faithfully and completely as possible. Notice I said I have learned - when I started my career I too was a novice at patient counseling. Caring for cancer patients creates expert listeners of most oncologists.

Thus I am amazed when I hear again and again that a doctor "didn't say much" about a patient's recent diagnosis. Is the physician really ignorant or too busy to educate the patient, or is the subject bypassed because he or she has nothing encouraging to say? It is unfortunate that some doctors look at the disease cancer with nothing but hopeless nihilism.

Therefore, as a public service, The Cheerful Oncologist, with only a modicum of sardonic delight, would like to reveal some helpful tips in ensuring that your doctor doesn't race in and out of an office or hospital visit without adequately answering your questions. These little secrets, some practical and some psychological, increase your odds of gaining the answers you need without resorting to exhortation or outright hostility, which tends to freeze the doctor with suspicion and make the tongue spout vague platitudes. No matter how extraordinary these tips seem, take it from one who has had them used on him - they work! I only ask that you apply them judiciously, as overusage can be interpreted as adversarial, and lead to mistrust. Remember, our common goal is to care for the patient with excellence and compassion!

The Practical Tips

1. At the beginning of the visit, tell the doctor you have questions - this warns him or her that counseling will be a part of the visit.

2. Write down your questions, and give a copy to the doctor so you both can go through the list together.

3. Do not be shy about asking the doctor to repeat the answer, or phrase it in more easily understandable language. A good doctor does not assume patients understand esoteric medical terms.

4. Invite the doctor to sit down, which brings all to eye level, and creates a less hurried setting.

The Psychological Tips (which create leverage - use with caution!)

1. Bring lots of family to the visit - the more the merrier. We docs tend to spend less time counseling the solitary patient.

2. Don't hesitate to announce any relatives in the room who are attorneys, whether they litigate or not. Attorneys get the doctor's rapt attention! If you don't have a lawyer in the family, dress all males in suits - looks impressive, if not intimidating.

3. If any family member is a doctor - sibling, offspring, nephew, niece - let it be known at once, whether they are in the room, or live nine states away. Rare it is to find the physician who would disappoint a physician's family member.

4. Produce a tape recorder, and say, "You don't mind if I record this, doctor? My family will want to hear what you have to say." This is the ultimate weapon against the lackadaisical counselor!

Now go, and be an advocate with confidence!