During the Society of Interventional Oncology (SIO) 2023 annual scientific meeting in Washington DC, USA, a panel of speakers delivered presentations on why patient-centred care is important, and how to provide it most effectively. The session comprised perspectives beyond interventional radiology—a nurse practitioner and a patient offered complementary and valuable insight—yet there were commonalities across the different presenters’ talks. All emphasised how crucial open communication between the patient and their family and healthcare professionals is. Only with this approach will patients receive the best care, which extends beyond clinical intervention to incorporate caring for the emotional and mental needs of the patient and their loved ones—this was a key takeaway from the session.
Physicians are co-narrators in the patient’s story
Eric Keller (Stanford University, Stanford, USA), whose presentation was delivered in his absence by Isabel Newton (University of California San Diego, San Diego, USA), underlined how “there is more to healing than what we do with our catheters and our wires”. Keller conveyed that “patients’ perspectives of the quality of our work has a lot to do with […] how nice the facility is, our body language, tone of voice and [whether] they can get hold of you for questions and concerns”. Therefore, how a patient feels their experience with a healthcare practitioner has gone is influenced by how it is framed—Keller gave the example of how it is better to tell a patient their biliary drain will be in for a year and for it to come out after six months, than it is to overpromise that it will in
Keller published a study in 2018 in the Journal of Vascular and Interventional Radiology (JVIR), the presenter went on to share, which illustrated that physicians’ and patients’ perceptions of the quality of their care depend on different variables. “[Interventional radiologists] valued minimising side effects and complications,” Keller averred, whereas from the patient’s point of view it is “not so much the actual outcome as much as not being surprised [by it]”. With this in mind, Keller wished to inform delegates that a physician’s role is as a “co-narrator” who seeks to “understand [the patient’s] story” and to help them “write those next few pages”.
Keller then put forward “three important non-procedural interventions that we can do to help maximise our patients’ experiences”. The first was advanced care planning, comprising an assessment of the patient’s goals and preferences for their care. The recommendation is “to facilitate this at the beginning of serious disease”, with scope to revise in line with the patient changing their mind, the presenter relayed. “It does not have to be us [who has these conversations],” Keller continued, “but we can advocate for them to occur as part of the preprocedural work-up”.
The second recommendation from Keller was to share alternatives to clinical interventions, to move away from what the presenter dubbed “old-school paternalism”. He made the point that “often we do a great job at discussing our interventions but not at doing the procedure. We are also inconsistent in how we handle preprocedure [‘do not resuscitate’] DNR orders.” As a remedy, the presenter suggested that these are dealt with “well ahead of time”.
Finally, Keller emphasised that “healing is a multifactorial process—it can be easy to forget the impact of nutrition, spirituality and social determinants of health [including] the patient’s socioeconomic status, living situation, race, etc.” Detailing that physicians tend to be sceptical of alternative modes of treatment, Keller vouched for talking to patients about their use of these so as to be more “inclusive”. The concluding note was that interventional radiologists should put a greater emphasis on the precise context in which a patient is being cared for—which is shaped by the aforementioned social factors. Examples of how to maximise these contextual aspects of cancer care, according to Keller, include advanced care planning, shared decision-making, and engaging patients about other aspects of their healing to become co-narrators with patients.
Multidisciplinary interventions make a difference
The second presenter was Angela Laffan, a nurse practitioner based at the University of California San Francisco (San Francisco, USA), who runs a survivorship programme for patients who have finished treatment with curative intent. “Cancer survivorship is to help optimise patients’ overall wellness,” she outlined for the audience. She works primarily with patients with metastatic neuroendocrine tumours and used them to illustrate why survivorship matters—many live with their cancer “for years or decades” and thus “miss out on a lot of resources” by virtue of not fitting the “standard model” of a survivorship cancer patient.
Laffan explained that those who work within the programme look at patients’ individual needs, which are affected by “age, gender, stage of life, treatment, diagnosis, and goals for treatment”. Key for consideration, the presenter continued, are whether a patient prioritises quality over quantity of life, or vice versa, as well as the financial and caregiver burden that their illness is having. “This conference is looking at increasing quantity of life, but there are things we can do as healthcare providers to increase quality”. Echoing Keller on acknowledging with patients the multiplicity of lifestyle factors that can impact their healing, Laffan cited an American College of Sports Medicine consensus paper from 2019, which recommended exercise as a means of improving cancer patients’ “quality of life, mental health, sleep”, among other factors. “Despite this, the majority of patients say healthcare providers are not routinely telling them not to exercise […] we should refer patients to exercise counselling if it is available”.
Laffan then expressed her certainty that “you all know the huge mental toll” on patients, who will often be living “from scan to scan” and footing “exorbitantly expensive” bills. Meditation can be a means of assuaging this psychological burden, and also improving symptom profile and pain levels, the presenter supplemented, recommending that physicians working with cancer patients should also offer this form of therapy where possible.
Beyond the patients themselves, Laffan then turned her focus to caregivers—a 2016 National Alliance of Caregivers study found that this group is 60% women, and 50% reported high levels of emotional stress. Half were also working in paid employment alongside their caregiving. “So, what do caregivers need from healthcare providers?” Laffan posed as a rhetorical question. “Recognition, detailed education and support with their role […] the vast majority of the time, they are not doctors or nurses,” Laffan stated, underlining that they are still “asked to perform medical tasks.”
In summary, there needs to be an “individualised approach for patients living with cancer as chronic illness,” Laffan advocated. “It is important we check in with patients and caregivers, particularly at times of transition […] Often they smile and say they are fine but that might not be their reality.” Reiterating, Laffan’s parting note was that “extending life does not necessarily equate to living well” and therefore, the focus should also be on quality of life, intervening early with a multidisciplinary approach. An example of the success of this is Laffan’s neuroendocrine wellness clinic, where patients are referred proactively, “rather than reactively, which is what we often do”.
Patient point of view: treatment as a “miraculous” tapestry
Lynn Lazzaro (a financial advisor based in Sparks, USA) gave her patient perspective on the care that saved her life mirrored much of what Laffan’s presentation covered. Diagnosed with a 13.5cm mass on her liver in January 2016, Lazzaro told delegates how her interventional oncology (IO) team gave her a year to live, “maybe two with treatment”. Living from scan to scan as Laffan had described was Lazzaro’s reality, the presenter acknowledged. “Looking back on the journal I kept […it] almost seems to reel as if it happened to someone else”. But Lazzaro recognised her experience in the previous presenters advocating for conversations—about treatment plans, goals and how to achieve them. “My treatment team asks me these questions often,” Lazzaro affirmed, referencing Atul Gawande’s book ‘Being Mortal’, which outlines how the “ultimate goal is not a good death but living a good life all the way to the end”.
Lazzaro described her life during treatment like a “beautiful tapestry—maybe if you pulled one string the whole thing would fall apart”. However, IO, she avowed, “was the miracle that began by adding years to my life, which ultimately gave me the chance at a cure—transplant after downstaging.” Her relationship with her multidisciplinary team, as mentioned by Laffan, was instrumental in reducing hers and her family’s stress—“treating me as a whole person gave me the resilience to get up and do it all again. They kept me informed always of my prognosis—an easier conversation for some than others—but factual honesty was key for family.”
“If treatment was an art or tapestry then the outcome is really the result of the art form of your profession—your judgement, your risks, your compassion saved my life,” was Lazzaro’s thanks for the work that the IO community, drawing attention to how the clinical and non-clinical aspects of a patient’s care play complementary roles.