A 40 year old single man was diagnosed to have cancer of left buccal mucosa (clinical stage AJCC T3N2M0) in March 2019. He had type 2 diabetes mellitus and hypertension. He received aggressive treatment in the form of neoadjuvant triplet chemotherapy (docetaxel, cisplatin, 5 Fluorouracil) followed by radical surgery and postoperative chemoradiation. His treatment was completed in September 2019. However, he had loco-regional recurrence without distant metastasis just within 2 months of completing treatment. At this point, he was again started on triplet palliative chemotherapy (paclitaxel, 5 Fluorouracil, methotrexate) from December 2019 to April 2020. Subsequently, he reported at our center as he was unable to attend the primary hospital for chemotherapy scheduled due to lockdown in view of covid-19. At the time of presentation, he was symptomatic with severe pain, swelling over the face, inability to speak and feed, and yes totally in denial of the disease. Clinical evaluation and sequential positron emission tomography–computed tomography done at primary hospital revealed progression of disease despite palliative chemotherapy. Along with aggressive disease, I also need to handle his brother's aggressive behavior (caregiver) who is very irritated, angry, tired, and disturbed emotionally as well financially. Now the role of mine as a trained radiation oncologist but having a heart of palliative physician came into the picture, which provoke me to write down this letter. First, I have started pain medication with other symptomatic care with feeding tube and of course a counselling session having the truth of ugly aggressive disease. The patient was continuously showing denial to accept the facts and demanded further chemotherapy. Anyways, I continued with the best supportive care along with starting of metronomic chemotherapy in the form of oral low-dose methotrexate and geftinib with no further testing for disease response and joint plan to follow symptomatically. After 4 weeks, in view of no response to chemotherapy as already expected, so it was stopped, and the patient was continued with best supportive care only. I do not know the rightness of my decision about metronomic oral chemotherapy; probably, I am just buying time for recounselling sessions to balance the patient's denial. One day suddenly the patient's attendant came in a very aggressive manner and demanded hospital admission as he suffered a lot and starts blaming to everything as his own family, finance, job was continuously suffering for last more than a year. He even demanded intravenous fluids, no more feeding by Ryle's tube or tablets, etc., as he is unable to attend and do any activity at his own house and job due to the responsibility of patient. My training in palliative care introduced me to the concept of rescue admission, where I admit a patient not for disease, but for the relief of the caregiver.
In India, the projected cancer incidence in 2020 is approximately 1.4 million, nearly two-thirds of them are already stage IV with the limited role of cancer-directed therapy. Such patients with advanced cancer are often having a high symptom burden and high burden on caregiver. Some patients have advanced cancer at the time of diagnosis and other than that in many patients, the cancer progresses or recurs further to an advanced stage over a period of time. Studies have shown that caregivers of patient with a short time interval between diagnosis and death experienced more psychological distress. Studies have reported that recurrent cancer patients have significantly higher symptom distress and their family caregivers report more adjustment problems and lower mental quality of life. Significant numbers of patients with advanced or recurrent disease are declared as to receive palliative care treatment only by the oncology teams and discharged, to make way for patients with a curative intent as public tertiary cancer centers are overloaded with a high hospital bed turnover rate. These discharged patients often have unresolved physical, psychological and emotional symptoms, adverse effects of cancer treatment, nursing-related issues, and limited physical functions which need attention in a nonacute setting before they are finally sent home. This arrangement will provide patient a respite from hospital, caregivers respite from care process, management of physical and nonphysical issues, empowerment of family/caregivers, planned and safe discharge, and continuity of care through liaison with local palliative care network. The respite model of palliative care is an effective bridge between hospital and home-based palliative care. A study on community respite palliative care has demonstrated relief for caregivers experiencing moderate to severe caregiving fatigue although evidence is still weak.
In India, Economic Intelligence Unit showed that access to quality end-of-life care services was lacking. Besides this, awareness about the concept of end-of-life care was very limited in our society as well as in medical fraternity which often resulted in ongoing futile active interventions which not only causes economic burden but also gives painful moments to patients and their family. People with advanced disease usually die in various settings like hospitals, nursing homes, and homes. Most people receive some hospital care either brief or extended after being diagnosed with serious progressive illness and hospital is still the most frequent site for end-of-life care. In a resource-limited setting like India, out of pocket spending on health care is around 85%. The cost of continued hospitalization in an acute care setting remains high, draining all the financial resources of the family. Hence, a cost-effective and sustainable alternative for continued palliative care beyond the auspices of hospital is the need of the hour. This case highlights importance of rescue admission and hospice care in Government setting for dying patients and those close to them without having much load on their pocket.
Take home messages:
- Rescue hospital admission is vital for a patient as well as for caregivers experiencing caregiving fatigue, especially in the areas where no other place (like a hospice care) is available.
- An alternative for continued palliative care beyond the auspices of hospital is the need of the hour.
- In India, Hospice care is much needed in Government setting for dying/terminal patients and to those who are close to them without having much load on their pocket.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
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Conflicts of interest
There are no conflicts of interest.
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