Before the appointment

When you have a serious illness, many questions are likely to arise, and you have a right to the answers. During a doctor's appointment, however, it's easy to get side tracked. Anxiety often runs high and can block your clearest thinking. As well, doctors have schedules to keep. If you feel pressured during the appointment, it may be difficult to stay focused on addressing each of your concerns. We suggest you maximize your time with the doctor by preparing for your appointments beforehand. Here are some tips:

• Write down your questions and then prioritize them (for instance, put a 1 by the most important, a 2 by the next most important, etc.).
• If you see that you have many questions, you may want to call the doctor's office and see if you can book a double appointment to be sure they all get answered.
• Bring all your medications with you to the appointment. This way, if the doctor prescribes something new or if you are experiencing distressing symptoms, he or she can review your medications to be sure there is no problem with drug interactions.
• When you arrive for the appointment, give the medical assistant a copy of your written questions and ask that they be put on the front of the chart so the doctor can see them.
• Have someone come with you into the exam room. This person should also have a copy of the questions. He or she can take notes during the appointment and help make sure your questions have been addressed to your satisfaction.
• Start by asking the doctor the most important question first, then the next most important, and so on. Stay focused on your questions. If you wander into interesting side stories you will lose valuable time.
• If you hear words you do not understand, ask for an explanation. Doctors get used to their "medical shorthand" and sometimes forget that it involves words the rest of us do not understand.
• When a procedure is recommended, ask about the benefits and the risks as well as any alternatives and their known benefits and risks. (See Specific questions below.)
• If the doctor does not have enough time, ask if someone else on his or her staff can answer your questions. If that is not an option, then ask if you can make another appointment so you can finish. Remember, you have a right to have your questions answered.
• Spend time after the visit talking with the person who came with you. He or she will likely have good insights about the appointment and can help you identify any areas that are still unclear.

Decisons about treatment: Questions you might ask

• How serious is this illness? If I do nothing, what is likely to happen?
• What exactly does the treatment accomplish? How does it work?
• Will the treatment you are recommending cure me? Give me added time? How much time?
• How much improvement can I expect? Will it allow me to return to my previous level of functioning? If not, will I at least be able to ____________________?
• What are the side effects of the treatment? How will they affect my daily life? Do they get worse over time?
• What can be done to manage the side effects? How well can we keep them under control?
• How and when will we know whether the treatment is working? What does "success" look like?
• Are there other options to this treatment? What are their risks and benefits? Expected outcomes?
• If our first treatment plan does not seem to be working, what would you recommend we do next?
• If no cure is possible, what are the chances I could at least improve?
• On the basis of my current condition, what do you expect in the next few weeks? The next few months?
• Do you think I would benefit more by focusing on comfort and quality of life rather than treatment? What is provided with comfort care? Can I have the support of hospice?

A time to treat and a time to let go

[This article from the New York Times brings up important points to consider, especially in the context of cancer therapy.]

By JANE E. BRODY, The New York Times - August 19, 2008

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.

“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”

He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”

Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

Tough Decisions
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.

“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”

The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”

With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.

“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.

The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”

In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.

Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.

And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.

It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.

Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.

He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.

Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”

The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.

Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.

For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”

He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.

When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”

For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.

(Posted by permission.)

Getting a second opinion

You may wish to get a second opinion from another physician. Awkward as it might feel, it is a good idea to let your doctor know about your plans because the second physician will request copies of your chart, past lab reports, etc. Doctors understand that second opinions, especially in the context of serious illnesses, are a good idea. Sometimes they are required by insurance, and sometimes it's simply something the patient needs to do to feel all options have been explored. If your doctor disapproves of your desire for a second opinion, remember that it is your health and therefore your decision to make.

Health care planning: Expressing your wishes

Once you have learned about the options available to you, weigh the information you receive in light of your personal values. Concerns about hope and quality of life are likely to surface. We suggest you look at the Important Decisions section of this website. It talks about some of the legal aspects of making your wishes known. In particular, you will want to write an advance directive describing your desires for life-sustaining treatment. (Even people in the "prime of life" would be well-advised to have written instructions of this sort in case something unexpected happens.) Talk to your family about your decisions and give a copy of your advance directive to your physician. This document will guide your family and the health care team if you eventually are unable to speak for yourself.