Looking for an On-Ramp: Delicate Conversations in Terminal Ovarian Cancer
by Julie Poucher Harbin and Jane Black
According to the National Cancer Institute, nearly 20,000 women in the U.S. will be diagnosed with ovarian cancer — which encompasses the ovaries, fallopian tubes, and the primary peritoneum — and nearly 13,000 are expected to die from the disease in 2022.
Despite clinical guidelines advising against intensive or invasive end-of-life care, more than half of patients with terminal ovarian cancer will receive a least one aggressive intervention near the end of life — such as undergoing chemotherapy treatment, being admitted to the intensive care unit, or being admitted to hospice, at such times that, research shows, these interventions wouldn't help prolong their life and would actually worsen their quality of life.
According to Duke Cancer Institute gynecologic oncology faculty Brittany Davidson, MD, and Laura Havrilesky, MD, as well as University of Colorado Anschutz Medical Campus faculty Carolyn Lefkowitz, MD, there is often a lack of understanding or absence of communication about palliative care options and reducing aggressive end-of-life care.
“What we should be striving for near the end of life is goal-concordant care, focused on the delivery of medical care in line with an individual patient’s values and goals for treatment and respecting any limitations delineated by the patient. For the majority of patients, aggressive end-of-life care is not
what they want,” they wrote in an editorial for the March 2022 issue of JCO Oncology Practice (originally published online on Nov. 8, 2021)
The editorial was published as a companion piece to a JCO Oncology Practice article by the University of Michigan, Ann Arbor, MI, and Wayne State University researchers on the role of “physician influence” on aggressive end-of-life care in women dying from ovarian cancer.
Lead author of the editorial Brittany Davidson, MD, a DCI gynecologic oncologist, associate professor in the Department of OB-GYN, Division of Gynecologic Oncology, and the director of gynecologic oncology fellowships, shares how she and her colleagues at Duke are approaching goal planning, palliative care, and end-of-life care in the clinic in this Duke Cancer Institute/Duke Division of Gynecologic Oncology Q & A feature.
Five questions for gynecologic oncologist Brittany Davidson, MD, about the best approach to patient goals and treatment expectations
What is the protocol that you and your colleagues in the Division of Gynecologic Oncology follow to make sure that patients understand their cancer treatment plan?
Recognizing how important the delivery of goal-concordant cancer care is, we identified a void in our practice where patients at high risk for death in six months were not systematically engaged in goals-of-care discussions with their healthcare team. We developed an alert strategy to let physicians know when a patient meeting this high-risk criterion is in our clinic. This alert includes a recommendation that someone from the patient’s care team start a goals-of-care discussion and consider a referral to the Duke Palliative Care clinic. This started as a pen-and-paper ID strategy and has since transitioned to an alert in the clinician-facing electronic health record. All our fellows and attendings have received advanced communication training on how to conduct goals-of-care conversations since these discussions are often anxiety-provoking and fraught with emotion.
How do you advise providers approach these conversations with patients and their families?
I teach them to look for an “on-ramp” from the patient— these are often questions they hear from patients that hint around topics regarding what the future looks like. I’ll ask permission to discuss these topics and, if given the go-ahead, ask what kind of information would be most helpful. I try to take the lead from the patient. Some people are really time-line oriented, and others are more concerned with symptoms or how to talk to their family. What’s important to the patient? Are there events they want to be around for? Symptoms they want to avoid? Some patients really want to know what it’s going to be like to die. It really is different for everybody. Most importantly, you can’t have an agenda when you start these conversations. Time constraints or emotional bandwidth may limit what a patient can process or what a provider can discuss, especially in a busy outpatient clinic. If you can only get through parts of the conversation, it’s important to set a time (next visit, a phone call the next day) where you can continue the conversation.
One of your concerns, as you note in the editorial, is that these conversations are happening too late in the patient’s cancer journey. What accounts for this?
There are barriers on both the physician and patient end. Physicians may see these conversations as too time-intensive and so avoid them. Others feel like it will adversely impact the patient-physician relationship as there is this idea of “taking hope away.” Patients may not know how to ask these questions or don’t want to give their team the impression they don’t want to do treatment. The data that exists shows that patients do value these conversations, and, with communication skills training, physicians can do this empathetically within the time constraints of a typical outpatient appointment while maintaining excellent relationships with their patients moving forward.
How is aggressive end-of-life care poor quality care?
Aggressive care toward the end of life is typically not in line with what the majority of patients or their families want. The problem is that often no one has directly actually asked them what they want. The patient may have been on the “treatment train” for so long that they forget that there is an alternative strategy that prioritizes relief from suffering in all of its forms. Our job as oncologists is to deliver end-of-life care that’s in line with their goals — but, to be able to do this, we need to ask them about their goals.
Some patients hear “palliative care” and assume it’s code for “end-of-life care”? When should this treatment option be offered?
This is a major problem—many patients equate palliative care to hospice and so are hesitant to consider their involvement. We do a lot of re-education of patients and their families on the myriad benefits of specialty palliative care. These specialty providers are truly experts in symptom management to help patients live the lives they want. Several major medical organizations recommend the involvement of palliative care within the first few months of an advanced or recurrent cancer diagnosis; however, this does not routinely happen. We must continue to optimize our use of specialty palliative care and the critical communication skills involved in goals-of-care conversations if we are to provide truly high-quality care in line with the goals of our patients.
Jane Black is director of Communications, Duke Department of Obstetrics and Gynecology. Julie Poucher Harbin is senior writer, Duke Cancer Institute.