To make wise medical decisions, you need to know whether you are a believer in modern medicine or a doubter.
Making the best medical decision for you is vital to Healthy Survivorship, and not only because doing so optimizes your chance of the best outcome. If you end up with a disappointing treatment result, your prior decisions affect--and may determine--your happiness.
What if an app could help improve (1) survival in cancer patients, (2) patients' quality of life and (3) the cost effectiveness of cancer care?
If my scans are completed and the results are available, don't I have a right to know?
To shorten patients' wait, why don't nurses relay scan results to patients? Given that I desperately want to minimize the time patients wait for results, here are reasons why I think that is not the answer.
My September 15th post in response to Penicllin Allergies Overblown introduced the problem of physicians over-prescribing broad-spectrum antibiotics when penicillin would be the more appropriate drug.
My August 14th post responds to Scientists Seek to Rein in Diagnosis of Cancer, in which Tara Parker-Pope discusses the recommendations of an NCI panel that some premalignant conditions should be renamed to remove the word "cancer" or "carcinoma." The move was prompted by concerns about patients being over-diagnosed and over-treated, a problem for both Healthy Survivors and public health.
For some people, the issue is money. Increasing the use of tests and treatments helps those on the prescribing/delivering side and hurts patients and insurance companies footing the bill. They object to lobbyists and politicians having any say in determining what's best for patients.
As a Healthy Survivor, I believe the fundamental issue is captured by a Memorial Sloan Kettering oncologist, Dr. Norton: "...doctors do need to focus on better communication with patients about precancerous and cancerous conditions. He...tells patients that even though ductal carcinoma in situ may look like cancer, it will not necessarily act like cancer — just as someone who is “dressed like a criminal” is not actually a criminal until that person breaks the law.
I've devoted much of my writing life to demonstrating how substituting one word or phrase can make a world of difference to patients. Yet I still believe that changing the language cannot replace effective communication.
If dealing with the uncertainty and high stakes of a potentially life-threatening disease that requires life-altering treatment, nothing replaces the time-consuming weighing of risks and benefits for the individual and developing a personalized plan of action.
Here's the dilemma: Your loved one wants to drive, saying, "I feel fine." Your loved one's doctor said (s)he cannot drive until cleared at the follow-up visit that is still 2 weeks away. What do you do?
Yesterday, Dr. Mikkaela A Sekeres addressed, "Keeping Cancer a Secret." He was prompted to write the essay after learning that a patient had been keeping his diagnosis of myelodysplastic syndrome [a pre-cancerous condition] a secret from his grown children and their children.
The patient explained, “'Our son has been away, doing a couple of tours of duty in Afghanistan,” he said. “We were going to tell our daughter, but. …” He paused, trying to find the right words. “It wouldn’t be fair, for her to know, to have this burden, and not him. We were planning on telling them when we’re together over the holiday.'”
Dr. Sekeres offers a few possible reasons, including "'sometimes the one thing that we can control is whom we tell...Some [reasons] are very personal (it’s my body, and what goes on inside it is my business). Some are professional (the screenwriter Nora Ephron kept her myelodysplastic syndrome a secret because she feared that no insurance company would sign off on any movie she tried to make). And some are altruistic (we don’t want others to bear the emotional weight of knowing).'"
His conclusion? "It’s our job, as doctors and nurses, to be deliberate in asking our patients how they will explain their cancer to others, to make sure they understand. Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden we shouldn’t allow cancer to dictate, too."
Next: Do Healthy Survivors ever keep such secrets?
We're talking about what it means to "let go." Because if patients run out of treatment options or they are nearing death, "letting go" plays a major role in Healthy Survivorship. So here's another definition:
For cancer patients who run out of treatment options, how can "letting go" help in the pursuit of Healthy Survivorship? How can it hurt?
A front-page story in today's Science Times poses a provocative question in the rapidly changing world of medical diagnostics: Can computer software ever replace physicians to ensure timely, correct diagnoses?
Few questions evoke physicians' discomfort like “Doctor, how much time do I have?”In oncology it's a common question that comes with the territory, forcing clinicians and patients to grapple with issues of trust, hope, uncertainty, disappointment, and grief....
A study designed to determine risks associated with hospitalization and delirium in patients with Alzheimer's Disease (AD) contains important lessons for Healthy Survivors.
What are Healthy Survivors to do if they want to go against their physicians' medical advice and take dietary supplements?
In my January 21st post, I shared a vignette that illustrates the notion that what you hope for affects whether your hope helps or hurts you.
Now let's look at the challenge of coping with the evaluation of a worrisome symptom. What can Healthy Survivors hope for?
In yesterday's post, I shared my reaction to a rant found on a cancer-related listserv. I explained my concerns regarding such expressions of anger, disappointment and frustration.
So what are Healthy Survivors to do if, for example, they learn they had not received important information about aftereffects of treatments they received?
A recent thread on a cancer listserv included the rants of listserv members who were angry they hadn't been better warned about the possibility of developing aftereffects. This is a problem.
Many patients struggle with uncertainty about what's happening now, what will happen in the future, and what they should do. Having dealt with illness-related uncertainty on both sides of the stethoscope, I've developed an approach that has helped me deal with my heightened sense of uncertainty in healing ways.
My recent posts have discussed some of the difficulties of modern medical decision-making in the context of PSA testing for prostate cancer. A new book by Harvard oncologist Jerome Groopman and Harvard endocrinologist Pamela Hartzband offers help to Healthy Survivors: Your Medical Mind: How to Decide What is Right for You.
While the furor over PSA testing plays out in the media, my sympathies lie with men newly diagnosed with prostate cancer . At the end of the day, the patient has to decide what to do.
You can find innumerable books and articles intended to help patients talk about pain with their healthcare team. Yet pain continues to be under-reported by many patients. Here's a resource that may help: ACP Health TiPS on Pain.
Perhaps most troubling to me of Hope or Letting Go, was Dr. Youn's question about whether the patient and his wife should be given a chance to say good-bye.
In my last post, Hope or Letting Go, I shared the story of a physician, Dr. Youn, still troubled by an incident that happened ten years ago. Since reading it, I've been bothered by some of the questions he posed.
For example, Dr. Youn asked if concern for the needs of the patient's loved ones ever take precedence over the patients' needs?
There is no one right way to obtain knowledge, nourish hope or take action. So, too, there is no one right way to heal a rift between you and your physician.
But there are good ways -- and maybe even a best way -- for you and your physician. What follows are my suggestions to the patient who, at her last doctor visit, raised her voice in frustration:
Although I didn't have a magic answer for the patient in my last post who emailed me about her doctor visit gone awry, I was able to offer her some thoughts about moving forward as a Healthy Survivor.
In response to my June 10th column, one commentor wrote: "The doctor may or may not be in expert in his or her field...."
Does a Healthy Survivor ever go to a doctor who is not an expert in his or her field?
A commenter wrote "[A]ll of your suggestions here seem to protect the ego of the doctor.... I do sometimes feel that I need to "arm" myself. It's not the way it should be but, unfortunately, sometimes it is the way things are."
Many things in modern medicine are not the way they should be, such as waiting in a cold exam room for physicians who are running late. What's a Healthy Survivor to do?
I find it troubling when Healthy Survivors describe obtaining sound knowledge (the first step to Healthy Survivorship) as "arming themselves with ammunition" to make their case to their physician.
And the problem is....?
We are not born knowing how to become Healthy Survivors. We aren't taught in school how to get good care and live as fully as possible when living with, through and beyond cancer or other serious illness. I wish we were.
If a picture is worth a thousand words, this 17-minute video by Eric Slade Productions is worth at least an undecillion (1 followed by 36 zeros).
Your doctor dictates into your chart, "The patient is tolerating treatment well." Huh? After every treatment you feel nauseated, lightheaded, weak, headachy and, in a word, miserable. What does your doctor mean by "tolerating treatment well"?
Obesity is linked to many serious medical conditions. Yet many physicians refrain from talking about "the elephant in the room" for fear of offending patients.
Inconceivable is the story of a couple who became pregnant with the wrong embryo. Early on, we learn that church and religion had played central roles in the lives of Carolyn and Sean Savage. When faced with their health crisis, their church became a source of both support and additional pain.
This is a painful topic for me to address,. But I will, since it is about a challenge for some patients:
What can Healthy Survivors do if mistreated?
In my last post I shared my response to a reader who was upset by the media reports of a new study. The commenter expressed ambivalence about discussing it with her physicians: "I don't know if it would be healthy or not to ask my doctors...if [knowing what we know today] I would have been spared this surgery."