Characteristics of the 22 participants are presented in Table 1.
Participants identified both clinical and non-clinical factors that were considered in patient prioritization for radiotherapy at BCCOE. Maximizing opportunities for cancer “cure,” and thus saving lives, was widely perceived to be the foremost goal of the radiotherapy program. Accordingly, disease curability and clinical factors that affect the likelihood of cure were upheld as the appropriate primary determinants of prioritization. However, participants described tension between curability and competing factors including age, palliative benefit, and waiting time. They were divided about the role that non-clinical factors such as social value should play, and agreed that poverty should not be a barrier.
Curability
Participants unanimously affirmed that curability has been, and should be, the primary overarching driver of patient prioritization for radiotherapy in the setting of limited resources. In general, patients were only considered eligible for radiotherapy if their disease was potentially curable and radiotherapy was required for cure. Within this designation, patients were prioritized based on their estimated chance of cure. Thus, clinical features that determine curability, such as cancer type and stage, were frequently referenced. As a representative example:
In my mind, a high chance of curability always trumps other things. (P08)
From a programmatic perspective, participants framed curative benefit in terms of maximal return on investment, or getting the “biggest bang for the buck” (P13). Rwandan participants tended to also link cure to societal benefit, noting that the “social impact of our money” is greater if a patient is cured than if survival is prolonged for a couple of years (P09), and asserting that “the few resources available should be used effectively to serve the people who are likely to be cured and to resume to society.” (P01).
Curability versus age
Given that there are more potentially curable patients than available resources, most participants believed that potential life-years gained by curing disease (as a function of age) should also be considered. Many illustrated the interaction between curability and age through examples of a clinical scenario requiring a choice between an older versus younger patient with similar chances of cure:
You have somebody who is 90 years old, you have somebody who is 20 years old; the overall benefit of curing the 20-year-old is going to be more substantial since they have many more years of life ahead of them. And I think that scales down in a valid way. It’s a tough choice to make, but if you have a stage Ib cervical cancer patient who is 20 and one who is 50 or 60, and you can only send one of them, I don’t think it’s unreasonable to send the younger person. (P12)
Others illustrated the tension between curability and age through examples of having to choose between an older patient with a higher chance of cure and a younger patient with a lower chance of cure. They invoked additional factors related to age, such as the opportunity to live a normal lifespan. For instance, a local program leader explained that Rwanda’s average life expectancy of 65 [sic] provided justification for selecting a younger patient over one in her 50s who might live a nearly average lifespan with palliative chemotherapy alone. (P09) A local physician ascribed the value in non-curative survival prolongation at a younger age to providing the opportunity to live through more of life’s stages:
A 45-year-old with cervical cancer who’s had children, married, and has lived—yes, she’ll benefit more, she’ll be cured—but there’s this child who could get 5 more years…” (P07).
The concept of life-years was especially salient to clinicians in choosing between adult and pediatric candidates. Participants reported that in reality, children with a curative indication for radiotherapy are typically sent, even if the incremental survival benefit of radiotherapy may be less than for adults on the waiting list:
[Age is] the number one thing we hang our hat on, that final push all the time. “C’mon, she’s young. She has many good years ahead of her. Give her a chance to live.” Even more in ped[iatric]s—obviously, we don’t even debate peds cases. We just give them X spots when they need them. And I don’t think anyone would disagree with that. We really feel that amount of life—or just the chance to live—is worth something. (P20)
Moreover, favoring children over adult patients, regardless of the likelihood of cure, was perceived by physicians to be acceptable to the local community, including to the adult patients who might be affected. (P02)
Curative versus palliative benefit
Despite widespread agreement that curable patients should be prioritized, participants expressed concerns of not being able to send patients for palliative radiotherapy, which is often indicated for pain relief, urgent management of complications such as cord compression or bleeding, or disease control in the non-curative setting:
We have a huge gap… All patients who have an indication, even for palliative [radio]therapy, should go to have this treatment. It’s palliative but it helps them to have a better life before they die. But we are not able to offer this opportunity, not because we don’t want to, but because we are limited in terms of resources. (P05)
Several suggested that tumor burden and the magnitude of potential palliation should be considered, referencing disfiguring and functionally limiting facial tumors or foul-smelling fungating masses that are not only painful but associated with stigma and risk of abandonment by a spouse, family, or community. They invoked principles such as the human right to pain control and to a dignified death in emphasizing that all patients should be able to receive palliative radiotherapy:
“Even if you have to die, you have to die in dignity.” (P06).
When pressed, however, participants unanimously affirmed that it would be unacceptable for a curable patient to lose their chance of cure because a patient with incurable disease was prioritized for a spot. As a local nurse explained, if you send a patient for palliative radiotherapy instead of a curable patient, that curable patient will also progress to an incurable stage, so “you are losing two patients, [when] you could lose one and save the other one.” (P04).
Participants across categories acknowledged the moral tension between clinicians’ role as stewards of a scarce resource and their professional obligation to treat the individual patient in front of them, which was especially pronounced in the face of an incurable patient who could derive substantial palliative benefit from radiotherapy. As one physician explained:
I have to think as a clinician who wants to improve [care] for my patient, but also as an economist who has to use effectively the resources we have. (P01)
Yet advisors discussed the flaws of a dichotomous view of curative and palliative intent, asserting that the priority placed on curative benefit should depend on more nuanced factors such as the likelihood of cure, pace of disease, and risk of toxicity. For example, while a patient with a 90% chance of cure should clearly take precedence over a patient with a palliative indication, one with a 5% chance of cure might not. (P08) Or, patients who have incurable but indolent disease and could live for many years with radiotherapy should potentially be prioritized over those with a modest chance of cure. Advisors also emphasized that curability should be weighed against the morbidity and risks of radiotherapy, particularly in light of concerns about technical capacity and availability of ancillary care at partner radiotherapy facilities. (P13) For example, for pediatric indications such as nephroblastoma,
The risks [of radiotherapy] are huge, and the toxicity is high, and the chance of cure is there but relatively small compared to the risks. Just because there’s a chance of cure doesn’t mean that they should be prioritized. (P11)
Several participants also noted the availability of morphine and other pain medications at Butaro as alternative palliation strategies, contextualizing prioritization decisions within the scope of treatment options.
Curability versus waiting time
Several clinicians and advisors discussed the daunting clinical and moral challenge posed by the waiting list. Because the guidelines prioritized curability, new cases of early-stage cancer were routinely chosen over patients on the waiting list with later stages, and as patients waited, their disease progressed further.
For example, you have a patient who is cervical cancer stage IIB, in category one [highest priority]. She cannot go now. Next time you meet, she has progressed to IIIB. And you have another eight patients who are stage IIB. The tendency is to keep sending these IIBs, while this person has been [waiting]. So, the decision is, do I send IIIB who has a low chance of cure, or do I ignore this person and keep sending the IIBs? That has been a very tough discussion, and sometimes we have to close our eyes and say, we cannot send many IIIBs even though they have been on the list. Just give them a few spots. (P18)
Some participants advocated for the opposite approach of prioritizing patients with later stages who are closer to losing their window for cure. For example:
There [are] patients who are curable, but if it’s not done as soon as possible, they will end up being metastatic and non-curable. And you see on the list, they are low priority, while practically-speaking, we can save them. [For] those people, curable but advanced stage, if there is a way to make them go to radiotherapy as soon as possible, that [should be] a modification. … For example, a cervical patient IB can wait 3 months. But a nasopharyngeal carcinoma IVA, in 1 month he can metastasize. (P01)
Social value
Participants were more divided about the role of non-clinical patient factors in prioritization decision-making. Half of participants reported that social value does, or should, play a role in patient selection for radiotherapy. Some candidly confessed to allowing social value and health behaviors to affect decision-making, as did this local physician:
I’ll be honest. If a patient—for example, single man, heavy drinker, heavy smoker, early stage or has a chance of cure, but has those habits… I would choose a mother with 5 children, less chance of cure, over him. So that has come up. (P07)
Others upheld this stance more unapologetically, as with this program leader:
I don’t think [social value] can’t come into play. They’re moral judgements just like age is to some extent. It might be arbitrary, and they may seem relatively clean cut at some points… In the best of all worlds, you treat everybody who could potentially benefit, but that’s not where we are, and you’re going to have to use some criteria to choose however many patients a month. If it’s two 30-year olds, and one is a drug addict and in prison all the time and the other one is a mother of 3 young children who is subsistence farming, it’s hard not to take those factors into consideration. Whether it’s ethically fair or not, I don’t know, but if we had those two patients sitting in a room and I could only send one of them, I know who I’d send. (P12)
One local participant ascribed consideration of social value to good leadership:
If you are going to choose, as an institution [with] good leadership, you could think, what’s the benefit? The benefit is that you will have a patient who will come back and do some beneficial activities for the community. She was a mother, she needed to take care of kids, a family, her husband. So that could be [considered], if I’m a good leader. (P04)
As in these examples, participants consistently illustrated the role of social value through hypothetical scenarios in which a mother of young children is selected over an older person. When asked specifically, some denied that gender is or should be an independent factor in selection, while others acknowledged a gender bias explicitly due to expected social responsibilities:
People are more sensitive to women. It’s not objective, it’s not written anywhere, but if I consider those social conditions, who is going to take care of kids, most of the time I will select to save a woman’s life. (P06)
In contrast, the other half of participants were firmly opposed to considering a patient’s value to society when selecting for radiotherapy. They alluded to the equal worth of all human lives, both implicitly and explicitly, when asked if social value should affect prioritization:
Even though you are useless in the community or you are causing harm, we just say, we are [going] to treat you; even though you are a drug addict… we treat everyone. (P02)
Others emphasized the methodological difficulties with considering social value, i.e., it is impossible to measure and not stable over time, as well as the hazards: “that’s so fraught with potential for abuse” (P08) and “there is so much bias and prejudice that goes into an assessment of social value.” (P17) A local program leader asserted that it would be impossible to operationalize social value due to its subjectivity:
We have never considered [social value]. And we are not planning to consider that because we look at a patient as a patient, not his role in the community. Because if you consider that, the next time you can say, oh this one is a teacher, he’s teaching a class of fifty people; this other one is just a casual farmer, if she dies… You can never bring that because it can be very subjective—how do you judge who is more important in the community than the other? (P18)
Ability to pay
Participants agreed that resources should be used for patients who cannot otherwise afford radiotherapy, referencing PIH’s core value of providing a preferential option for the poor. Since the vast majority of patients at BCCOE fall into this category, socioeconomic status was generally not considered in patient selection. However, participants expressed differing views about patients who fall in a “gray area” of affordability. For example, a local program leader suggested that patients who are prominent community members, such as a church leader, may be able to raise funds, which would reserve resources for poor patients without a social network. (P09) Conversely, others warned of the consequences of asking patients and families to use their savings and community resources to pay for radiotherapy, noting that the most common cause of personal bankruptcy in the United States is having cancer. (P12) One physician explained that ability to pay becomes more relevant with lower priority clinical indications for radiotherapy, while pointing out that determining ability to pay is methodologically challenging. Others noted that poverty can pose significant barriers to potential radiotherapy candidates even if financial costs are covered by PIH. For example, navigating travel logistics and making childcare arrangements may be daunting for patients without resources. (P08)
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