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Cervical Cancer- Associated Suffering and the Pall ...
Cervical Cancer- Associated Suffering and the Palliative Care Needed to Relieve it
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Video Transcription
I know it's been very difficult in Vietnam and I've missed being there. But anyway, I will say a little bit about some work I did, supported by the World Health Organization, to characterize suffering due to cervical cancer and to describe palliative care that would be needed to relieve the suffering. And I was struck particularly by the first case, for the reasons that Dr. Goodman mentioned, a young woman. And I always like, when introducing a case, to say something immediately about the patient as a person. So we know she's 39 years old, but I don't know if she has children. I don't know which province she's from. I don't know what kind of work she does. And I don't know how much pain she has or other symptoms. We do know that this tumor is invading the pelvic wall, so there's certainly a chance it could be invading one or more nerve plexuses in the pelvis and causing a lot of pain. And I would add that I always worry most about young patients. Young patients like her, 39 years old, often live long enough to suffer horribly. So it's a tragedy in many ways. It's a preventable disease. If everyone had access to HPV vaccination and early diagnosis, they wouldn't be in this situation. And then, of course, there's so much suffering associated with cervical cancer. So I'll start with, I always like to start with a patient. You already did, but I just want to point out that in this picture, you see this patient alone. And as you're going to hear in a few minutes, patients with cervical cancer are often alone because they are stigmatized and even abandoned by their intimate partners often. I don't take money from private industry. So I'm going to go a bit quickly. I apologize for that, since there's not much time. And I'll stop whenever you say I should stop. I'm going to describe a study we did to characterize suffering associated with cervical cancer, and then describe an essential package of palliative care for cervical cancer. There's evidence in the literature that women with cervical cancer tend to experience more complex and severe suffering than that caused by other cancers. So to enable design of optimum palliative care, we did a study to characterize the major types, severity, prevalence, and duration of suffering due to cervical cancer. And there was very little data in the literature, very little literature from low and middle-income countries, LMICs, low and middle-income countries. So we basically polled experts in palliative care in cervical cancer to supplement the literature. And we distinguished between patients who died from cervical cancer in 2017 and those who had cervical cancer in 2017 but did not die of it. These were the findings of our study regarding physical suffering. And you'll notice the columns that distinguish between those who died in 2017, the decedents, and non-decedents. So moderate or severe pain was very common among those who died, 84 percent, and the average duration was four months. Fatigue and weakness were very common. Also very common was malodorous vaginal discharge and bleeding. About two-thirds of the patients who died had those, and about half the patients who didn't. And of course, malodorous vaginal discharge contributes to psychological and social suffering and social isolation as well. This slide shows the psychological, social, and spiritual suffering that is experienced by women with cervical cancer. So very high prevalence of anxiety and depression, more than half the patients who died. And anxiety was experienced by half the patients who had cervical cancer but didn't die. And also common among family caregivers. And as we know in Vietnam and in the developing world, family caregivers have to be with the patients in the public hospitals and are necessary to provide personal care. Sexual dysfunction is very common, and I want to emphasize the social suffering, the stigmatization, discrimination, financial difficulties. As we know, patients with cancer so often experience financial catastrophe. They have to sell their possessions, sometimes their homes, their farms, their animals, their motorbikes, to pay for medicines, even not for pembrolizumab or bevacizumab. Even the 10 or 20 percent co-pay for their treatment can be devastating financially. And then what I find, just a terrifying statistic, more than 40 percent of patients are abandoned by their intimate partners at the time when they're most symptomatic, having pain, having anxiety, having side effects from treatment, and at that moment also abandoned by intimate partners. So again, going quickly, just saying a few words about what palliative care is. Most simply, it's prevention and relief of suffering, and the exact nature of what is provided, what services are provided, depends on the local need. It should be provided both by specialists, like gynecologic oncologists like you, and any oncologist, also by primary care staff at the district and the local levels, because most patients who have cervical cancer and any cancer are not in the hospital but in the home, and most patients want to die at home, at the end of life. So there, care needs to be provided by primary care providers and by staff at the community health centers. And Vietnam Ministry of Health guidelines now enable treatment to be provided by the community health centers, not just preventive care but also treatment. So one of our big goals in the near future is to integrate palliative care into the services provided at district and community level. And again, community level, I mean the Again, moving on quickly, the WHO has emphasized that the World Health Organization has emphasized that palliative care is an ethical responsibility of health systems. It's not an option. It's a necessity. It's an imperative, and it needs to be available in the community. And the essential medicines, including oral and injectable morphine, have to be available with precautions taken to minimize the risk of diversion to the black market. Palliative care is not an alternative to treatment. It should be integrated with treatment, especially when treatments can have toxicities and adverse effects. And this slide just shows that treatment and palliative care, disease treatment and palliative care, often should be given together. WHO has various guidance documents on palliative care that I helped to write and edit. And just in the last year, with support from WHO, we published these papers. The paper that includes the data on how women with cervical cancer suffer, a paper on the essential package of palliative care for women with cervical cancer, and an augmented package. And if I still have time, Dr. Chi, I can briefly describe those packages. Yeah, just a couple of minutes would be great, sir. Thank you. Okay, so the essential package includes a set of interventions, medicines, equipment, social supports, and trained human resources. The interventions are very simple, prevention and relief of physical suffering like pain, psychological suffering, social and spiritual suffering. The medicines are a very concise list of safe, effective, inexpensive medicines that can be administered effectively and safely by any doctors with basic palliative care training. This is the list, and I emphasize, of course, oral and injectable morphine, oral metronidazole, also for vaginal insertion to treat malodorous vaginal discharge. The pills can be carefully inserted to minimize risk of bleeding from friable tumor, and they're very effective. We've been told by colleagues who do this that it can be very effective to treat the malodorous vaginal discharge. And then, because anxiety and depression are so common, medicines to treat anxiety and depression such as selective serotonin reuptake inhibitors can be used effectively to treat uncomplicated mood disorders like anxiety and depression associated with cancer. Very simple equipment, much of which should be available in any hospital. Opioid lock boxes to secure the opioid and adult diapers because of incontinence and bleeding. Social supports are very necessary, especially for the poorest patients. As we know, patients' families sometimes have to live at the hospital, they sleep on the ground, so food packages, blankets, sleeping mats, etc. Very important. And then, as I mentioned, palliative care should be available at all levels of health care systems from cancer centers like district hospitals to community health centers and in the home with community health workers visiting in the home. There are, of course, many cases of cervical cancer where there's suffering that is so severe that it's refractory to an essential package for a variety of anatomic and psychosocial reasons. Therefore, we also proposed an augmented package which is described briefly here. And those papers that I mentioned, and I'll end with that slide, has all the information. They're available. They're open access at these websites. So maybe I should stop there, Dr. Cheek. Yes.
Video Summary
In this video, the speaker discusses their work supported by the World Health Organization to characterize suffering due to cervical cancer and the need for palliative care. They highlight a case of a young woman with cervical cancer and emphasize the need to consider the patient as a person, not just a medical case. They discuss the physical, psychological, social, and spiritual suffering experienced by women with cervical cancer, including common symptoms such as pain, fatigue, malodorous discharge, anxiety, depression, sexual dysfunction, stigmatization, discrimination, and financial difficulties. The speaker describes the importance of integrating palliative care into the healthcare system, especially at the community level, and provides an overview of an essential package of palliative care interventions and medicines. They also mention an augmented package for severe cases. The speaker concludes by mentioning published papers on this topic that are available for further information. (Word count: 189)
Asset Subtitle
Dr. Eric Krakauer
March 2022
Keywords
cervical cancer
palliative care
patient-centered approach
symptoms
integration of palliative care
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