Embracing Patient Participation in Cancer Care Decision-Making
by J. Leonard (Len) Lichtenfeld, MD, MACP, served as Deputy Chief Medical Officer for the American Cancer Society
Patient-centered care is at the forefront of today’s healthcare discussions, and even more so when these conversations are focused on the treatment of cancer patients. Now if we could only figure out what it means to be ‘patient-centric’ as health professionals, we would be able to practice what we preach.
Healthcare delivery must change. As an industry we need to embrace the digital revolution and its unprecedented ability to expand access to data. The treatment landscape is changing and along with it, patient expectations. Patients are, and will continue to become, more engaged partners in decisions about their care. In the not-so-distant future, physicians should expect to provide increased levels of transparency and a genuine willingness to collaborate, or they may find their patients going elsewhere to find a setting more receptive to this preferred approach to care.
That is not the traditional model that many of us are used to. Doctors were always the pre-eminent leaders of care: we held all the information, knowledge, and skill close to the vest (so to speak) and offered opinions from a position of authority that were not subject to discussion or dissension. “The doctor knows best” approach was the law of the land, and as a patient you rarely felt like you were allowed to question or disagree. You did what you were told.
In many ways that model still exists. However, it is now subject to change in ways that were not anticipated or even appreciated even recently.
Take medical records for example: years ago, they were the property — yes, the property — of the physician and the medical practice. Today, they are supposed to be readily and immediately available to patients, and in many locales, it is the patient who owns the information in that record. I was recently in a situation where I saw my blood test results before my physician. Some folks are even seeing their biopsy results before their doctor, which may pose significant communication challenges, especially if that biopsy reveals a cancer.
Today, patients and consumers (not all consumers are patients) have access to much more information than even we had as physicians a decade ago. “Dr. Google” is no longer an abstract consideration. Even I go to Google to find medical information and articles on a particular topic and my colleagues are devoted fans of other data sources, including apps like Up-to-Date.
The net result is a tectonic shift in how we receive and process our medical information and how that translates into the care of our patients. To successfully practice medicine, we need to be flexible and open to the application of new technologies. While not every patient has access to a computer — or perhaps the skills or time to search online for information — the majority do and are proactively taking a more active role when it comes discussions surrounding their care.
The doctor — patient dynamic has shifted. The role of the clinician as the single authoritative voice has changed. We now need to pay close attention to the questions and expectations of patients and families. We need to ask, not assume, what the best course of action may be for each individual patient.
In the cancer sphere, this means asking patients about their goals. Is it comfort, cure or tolerance for side effects that may interfere with their everyday lives? Or is the goal to use the most aggressive therapy possible? We need to treat cancer care like a partnership, not a dictatorship. Adjusting to this new practice of medicine takes time and effort, all of which are in short supply these days. As challenging as it may be, we must find a way to provide care that meets patient needs and expectations.
As physicians we should expect patients to ask questions and we need to provide answers. These patients may be facing life-threatening illnesses and may well seek other opinions. They may want to pursue clinical trials or choose not to be treated at all. Some may request that they be kept as comfortable as possible. In many instances, none of these options may align with what the doctor wants, but when it comes to ‘patient-centricity’ it’s what the patient desires that matters the most.
Individuals that are highly engaged in their healthcare are referred to as “activated patients”, They embrace and take into consideration all their available treatment options. They have taken an ‘active’ role in their care, especially when it comes to decisions about their cancer treatment.
Patient-centered care starts with a trusted partnership. This means doctors, patients and families work together to make treatment decisions. This approach also requires a level of transparency and candor. Patients and their loved ones need to feel comfortable asking questions and achieve a level of satisfaction and understanding when we provide answers. Our goal: make sure the patient leaves the discussion with the confidence that their concerns have been addressed as best possible.
When discussing treatment options — especially post-pandemic — we need to recognize that patient interest in clinical trial participation continues to increase. It is no secret in the cancer community that clinical trials offer opportunities to access new approaches to treatment that may improve on what is currently available. At the same time, there have never been as many available trial options as we see today for cancer patients. Clinical trial as a treatment option has become more mainstream. Yet as physicians, we are still woefully behind in when it comes to identifying and referring patients to enroll in these trials.
There are a lot of reasons why people don’t participate in trials, not the least of which is the general lack of awareness and understanding about how to find and apply for a study. Thanks to the digital revolution I referenced earlier there are now patient-friendly, online resources available to help people find trials and which trials are right for them. However, if a patient or family member finds a trial and shares it with their care team only to be offhandedly dismissed, not only is that patient’s interest actively and inappropriately deflected but the opportunity that a trial may improve the patient’s outcome may be lost.
If we are to continue making progress in cancer care, we must make treating the patient a team effort and everyone — including patients and their families — need to be part of that care team. I suspect most professionals in the cancer space believe they are already meeting these needs. However, feedback from patients suggests that it is not always the case.
Willingness to be a guide instead of an authority creates possibilities for patients and clinicians alike including higher satisfaction, higher compliance, better outcomes, and stronger communication. We can no longer act as authority figures if we want to share the goals of many of our patients. In this era of patient-centered care, patients and their loved ones need to know that they too have a role to play, and that their care team is accountable when it comes to meeting patients and family’s needs and wishes.
Patients have a voice, and they want to be heard. As physicians, we should welcome this level of engagement so that patients can have the confidence they are being heard without fear of disdain or retribution.
— Dr. Len is well known for his blog, Dr. Len’s Cancer Blog, which first appeared in 2005 and which continues to address various topics related to cancer research and treatment.
