There is much talk of “shared decision making” in medicine–but is that what’s being practiced? And even if decision-making is shared–is that what is needed?
Perhaps a more important aspect of a medical decision making is not just that decisions are shared–but that they are informed, knowledgeable decisions. I find that a key challenge that patients encounter today in medicine is not having a sufficient understanding of the decisions they are being asked to make.
Jenna, who has relapsed multiple myeloma, is a case in point (note: patient names have been changed to protect confidentiality).
Jenna was diagnosed with myeloma six years ago. She has had several relapses: first, after a stem cell transplant; then, on two occasions, after a number of medication regimens. Her myeloma most recently relapsed after being in complete remission for almost a year following treatment with a newly approved medication.
But the side effects of that medication were devastating for her. She developed a keratopathy — which is essentially damage to the clear cornea that forms the surface of the eye–that made it difficult for her to see her hands. Her partial loss of vision lasted for months. Fortunately, her vision has now improved, but some things are still blurry and night driving is still challenging for her.
So when her myeloma returned and her doctor suggested retreating with the same medication that caused her visual loss, she was hesitant.
She reached out to me. “How likely is it,” she wanted to know, “that my visual loss could happen again?” That was her greatest fear.
Since the medication was newly approved, there was no published clinical research on the question. But I reached out to the company to see if they had looked at this–and they indeed had. A review of the post-marketing data that the company shared with me showed that for patients who develop a Grade 3 keratopathy, the majority will develop some degree of keratopathy again following retreatment; even for patients who developed a less severe Grade 2 keratopathy, there was still a risk of recurrence.
The patient explained her reservations to her doctor. He appreciated her concern and suggested another regimen. Fortunately for Jenna there were other options.
Multiple myeloma offers a good example of how complex these choices can be. It is a difficult bone marrow malignancy for which there are many options–but no magic cures; and all of the options have significant side effects that have to be thoughtfully considered. In this case, the possibility of developing keratopathy with this therapy is a real and truly problematic complication because it can become a chronic problem and because of the risk of recurrence if the same treatment is given again.
Sam, another patient with relapsed myeloma, was at a similar crossroads. His doctor suggested a new four medication regimen that would be followed by a stem cell transplant.
But when the patient looked up the side effects of the medications his doctor had suggested, he was concerned, like Jenna. He, too, had had a prior stem cell transplant, and it had been very difficult, so he was concerned about that, too.
I reached out to an oncology colleague to gain a more in-depth understanding of the possible options, the goals of therapy and the side effects the patient might experience.
Why did the patient need such intensive medications before the stem cell transplant? I asked. The oncologist explained that the greater the remission achieved before stem cell transplant, the greater the likelihood that the stem cell transplant would be successful. The patient would need to be on medications post-transplant also; but, he said the remission he would get after stem cell transplant could last a long time — a deep remission that could last many years.
What about CAR-T—another therapy the patient was interested in? “CAR-T could be a possibility, the toxicities are manageable, but some of them can be severe,” he shared; “hopefully the stem cell transplant would be successful. The key is to eradicate the myeloma clone that remains,” he said. “There is an aphorism that ‘no one has yet cured myeloma,’ but there is a chance this could become a reality in the near future.” Treatment with four medications before the stem cell transplant can be very successful in knocking down those clones–”much like doctors treat tuberculosis,” he added.
Explaining the pros and cons of options takes time
“All patients need empathy as they make these decisions,” the oncologist explained. “Empathy takes time; but spending that time means your patient has greater knowledge; and knowledge is power.” Sadly, in today’s health care environment, time is often in short supply.
When this information was relayed to the patients and their families, they were relieved. “Now we understand the choices,” they said. “Even better–we now understand the WHY of the new regimens that were suggested.” In Sam’s case, the stem cell transplant–“just seemed to offer more suffering to us,” the family said. “Now we can see the light at the end of the tunnel.”
Understanding and discussing options does take time. But patients need–and deserve–
1/ An understanding of their condition–and WHY they should undertake a given therapy;
2/ An understanding of the options available (which should always include a discussion of the option to do nothing–and what the consequences of that might be);
3/ What the side effects are of each option, and how those will change life for them in ways that can be potentially important to understand.
I am not one for acronyms, but HOW might help one remember these three key asks:
- How will this treatment impact me (side effects); what are my
- Options– including the option of not treating; and
- Why do I need to pursue this therapy?
Patients don’t just suffer from lack of “shared” decision making; they suffer from lack of informed decision making–the ability to make decisions with better knowledge of what the options are and what’s at stake.
A new diagnosis or a new treatment regimen can be quite a lot to digest. Preparing a list of questions ahead of time and even scheduling an extra appointment with your clinician to have the space and time to bring them up is the best way to make sure you get your questions answered.
In Jenna and in Sam’s cases, taking the time to review these options meant that patients who were wavering were able to move forward with the therapy their doctors recommended–and move forward with confidence.
Medical Disclaimer:
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
Photo credit: Artur Verkhovetskiy
