Parastomal hernia: Quality of life
23 March 2023
1 February 2021
I reach the radiotherapy outpatient department on a Monday morning geared up and ready for the week ahead. With thoughts of a busy day and a busy week lying ahead of me, little do I appreciate then that my experiences over the week will continually repeat in cycles, much like the entire human existence and offer me reflections on life. The pandemic has made many of us re-evaluate ourselves and our relationships, many of which have been strained.
I believe that oncology endpoints can be assumed to mimic human relationships. A 70-year-old frail gentleman has a metastatic oral cavity cancer and is planned for palliative therapy with oral methotrexate. While his overall survival will most likely be a few months, we offer him oral metronomic chemotherapy and supportive care aiming for a decent quality of life. Most chemotherapeutic agents offer a similar overall survival of around six to nine months in the context of advanced or metastatic head and neck cancers. Similarly, in life, some relationships come with an expiry date, no matter what.
A 50-year-old gentleman presents with a recurrence of his locally advanced rectal cancer nine months after completing adjuvant treatment. Our surgical colleagues have seen him, and his disease has been deemed unresectable. He has been started on chemotherapy with oxaliplatin and capecitabine and has tolerated the first two cycles. I know well it is a matter of time that the drugs will delay progression. Progression-free survival (PFS) is a popular endpoint in oncology research that loosely means the time it takes for a disease to get worse.1 Interpersonal relationships are often subject to intense emotional and mental stress, that require continual repairing. However, situations arise when it may not be possible to start on a clean slate entirely, and one is left with no choice but to accept whatever has happened and move on. In other words, one has to take the inevitable that the relationship cannot be “cured”, but further worsening can be avoided. For some tumours like advanced ovarian or colorectal cancers, PFS may even be a loose surrogate for overall survival and may often be nearly equal to overall survival. Likewise, some relationships may not worsen again after one episode when both parties make conscious efforts to put things behind them and move on.
On Tuesday, I see a 40-year-old lady with visceral dissemination of hormone receptor-positive breast cancer receiving systemic chemotherapy. While she and her family have been counselled about their predicament, they may still have some time with their loved one to fulfil their wishes. Like the overall tenure of each human relationship, overall survival parameters vary grossly from one cancer to another. For example, a metastatic gall bladder cancer is likely to be fatal in a matter of mere months, even with the best available chemotherapy. On the contrary, a man with metastatic prostate cancer can be expected to survive a few years with the current standards of care.
Overall survival is the gold standard when it comes to measuring the worth of any cancer-directed intervention.2However, in patients or in relationships where one knows that the writing is on the wall, quality of life, or quality of the time left in the relationship is a premium. Quality of life is a crucial metric that seeks to quantify the actual well-being of an individual.3 While one may explore multiple therapeutic options to prolong life, one has to make a conscious decision as to how the prolongation will impact on its quality. Merely prolonging life while impairing its quality is detrimental. Similarly, when one knows that a relationship is irreparable, it is best to consider its quality than to keep trying to prolong it endlessly.
On Wednesday, I get an urgent consultation request for a lady with non-small cell lung cancer admitted in the neurosurgical ward who has presented with acute onset lower limb weakness with bladder and bowel involvement and has been diagnosed to have metastatic spinal cord compression. She is 70 years old with a WHO performance score of 2. The surgeons have already determined she is not a candidate for decompression. She is taken for urgent palliation with a single fraction of radiotherapy, with adequate steroid cover. Similar to the previous example, while her fate is probably already decided, but the urgent intervention offers to improve her quality of life, even if minimally.
On Friday, I get a call for radiotherapy planning for a patient who has cervical cancer with brain metastases and had received primary chemoradiotherapy three years ago. She is 74 years old, with a WHO performance score of 3 and requires continuous oxygen support. A decision is taken not to treat her with radiotherapy to the brain but offer her supportive care. Her three-year disease-free interval reminds me that a repaired relationship may suffer a relapse at any time. And sometimes a relapse can be so devastating that it does not offer much in terms of salvage.
On Saturdays, I see my radiotherapy patients on their weekly follow-up. We have a preponderance of head and neck cancer patients who will often present with grade II or III acute skin and mucosal toxicities as they move into the last weeks of therapy. Acute radiation reactions are defined as those occurring within 90 days of treatment and usually heal entirely with adequate care. However, late reactions or those occurring beyond 90 days persist and never completely heal. Some acute reactions may persist as late reactions, the so-called “consequential late reactions” (for example, chronic xerostomia is a consequential late reaction to acute xerostomia). For human relations, an acute bad episode may be amenable to rationalization and understanding, that may completely disappear like the resolution of acute radiation mucositis. But they may even persist, and then never go away completely. Therefore, the role of supportive care cannot be overemphasized, both in cancer care and in human relations.
The previous year has been a revelation for all of us. While it has subjected us to intense mental, emotional, and physical stress4, we have gained a thorough idea of what is vital in our lives. It is imperative that human relationships are valued on par with professional commitments, and the ongoing global crisis should teach us to prioritize personal contentment over professional gains. A morbidity audit from the CDC in August 2020 depicted that nearly one in four healthcare professionals had considered suicide in the immediately preceding one month for their troubles.5 While this is an alarmingly high number, it depicts the frailties ingrained in each of us and reiterates that before clinicians, we are humans. Even when our human forms are damaged and broken, sometimes beyond repair, empathy and patience for ourselves and our fellow beings might hold the key in this perennial struggle. May the progression-free survival of our relationships always closely mimic their overall survival.6 After all, as said by Rabindranath Tagore, “faith is the bird that feels the light and sings when the dawn is still dark.”
Conflicts of interest: There are no conflicts of interest to declare.
Funding: There is no funding to declare.
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