|Year : 2020 | Volume
| Issue : 5 | Page : 141-144
Social issues faced by cancer patients during the coronavirus (COVID-19) pandemic
Nirjari Viren Dalal
Gunvati J. Kapoor Medical Relief Charitable Organization, Mumbai, Maharashtra, India
|Date of Submission||03-Apr-2020|
|Date of Decision||06-Apr-2020|
|Date of Acceptance||08-Apr-2020|
|Date of Web Publication||25-Apr-2020|
Nirjari Viren Dalal
7A, Barodawala Mansion, 81 Dr. Annie Besant Road, Worli, Mumbai - 400 018, Maharashtra
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Dalal NV. Social issues faced by cancer patients during the coronavirus (COVID-19) pandemic. Cancer Res Stat Treat 2020;3, Suppl S1:141-4
| Cancer or Covid-19 – Who Is the Killer?|| |
This was one of the questions asked by a caregiver to a Gunvati Jagan Nath Kapoor (GJK) Foundation Patient Guidance Coordinator when they had called to follow-up about the patient's health and to make them aware of the risks due to the coronavirus disease 2019 (COVID-19) pandemic crisis. The patient in question had breathed her last a few days ago. Hearing about the COVID-19 pandemic, the caregiver's question came straight from a root problem faced by all cancer patients and their families, which is “fear.” Fear is one of the strongest emotions and is often a major part of the lives of the people who deal with this dreaded disease. The COVID-19 pandemic has not only caused additional fear in the minds of patients and families but has exacerbated all their social issues; the battle is going to be even harder than before on the psychosocial front for these cancer patients.
As we all know, cancer is one of the most devastating diseases, and according to the World Health Organization, there were more than 2.25 million cancer patients in India in 2018. This is a disease that does not distinguish based on age, religion, or financial status, but has a huge impact on psychosocial (social, financial, and emotional) well-being of the patient and the caregiver. It has been proven that through an integrated approach where social and emotional care is combined with treatment care, the patient's quality of life and their approach to dealing with cancer is more effective. These psychosocial issues faced by patients play a huge role in their fight toward obtaining victory over cancer. GJK, whose Patient Guidance Coordinators work closely with the urology germ cell tumor cancer patients at the Tata Memorial Hospital, Mumbai sees 81% compliance to treatment and better patient outcomes by providing guidance, emotional support, and reducing their socioeconomic barriers.
The COVID-19 is an infectious disease which attacks the body's respiratory system. People with pre-existing noncommunicable diseases, such as cardiovascular disease, respiratory illness, diabetes, and cancer appear to be more vulnerable to the virus and can become severely ill. Coronavirus spreads rapidly and has affected >1,214,466 people and counting worldwide. The virus has killed 67,767 and counting; the current fatality rate is 5.58%, and it is causing a severe health-care crisis. Most countries around the world have enacted lockdown protocols, curbed travel, and mandated strict social distancing protocols to limit the spread of this infectious virus.
Oncologists all over the world are in a predicament, “Is treatment and chemotherapy worth the risk in the light of the COVID-19 pandemic?” Cancer patients are at a high risk of contracting this infection, as their immune systems are compromised due to the disease as well as due to the treatment. To protect the immunocompromised individuals, oncologists, and health-care systems (hospitals) all around the world will need to take into consideration the individual patient history, stage of cancer, specific treatment plan and then weigh the risks of delaying treatment versus providing treatment. In Wales, the UK all non-urgent surgeries have been put on hold by the health minister, taking into account the patients' health and safety of the staff. India's honorable Prime Minister Narendra Modi has also declared a 21-day lockdown and declared that only essential services will be operational.
On account of the lockdown and to contain the virus outbreak, major cancer hospitals like the Tata Memorial Centre-Mumbai, and All India Institute of Medical Sciences (AIIMS), Delhi, where almost 60%–70% patients come from all over the country for treatment, put out advisories and set up helpline numbers. They postponed all follow-up cases during the lockdown. To avoid overcrowding, they decided to only allow patients currently taking chemotherapy and active emergencies for consultation. All other patients were advised to call the respective helplines and outpatient departments (OPD's) for their queries.,
However, in a country like India, with a population of more than 1.3 billion, where access to health-care is a major issue, where the doctor and the patient ratio is skewed, treatment cost is high, where a majority have no understanding of cancer and its implications, where income inequalities are high, the COVID-19 pandemic has not just brought the entire country to a standstill, but has increased the plight of cancer patients, especially those in the low-income group.
Here are the major issues of cancer patients and their families at this point in the pandemic. Issues have been identified by GJK Patient Guidance Coordinator phone calls with patients and their families, and some information has been obtained through digital media.
Patients have developed fear, a fear of the unknown. “Is cancer or COVID-19 going to kill us?,” “What should we do?” “Our doctors have said you have to wait for treatment?,” “How do we save ourselves?” “Will my disease increase, will the past treatment be as effective?” “No one is telling us anything. They have told us to go home.” These statements clearly depict fear, stress and the helplessness of patients.
Anxiety and stress
Patients are anxious about COVID-19 and its impact. They are also worried about the risk to their families. The uncertainty about treatment continuation due to the virus spread was stressful even for the newly diagnosed patients, and more so for those who had just started with chemotherapy. Scroll recently brought two incidents to light, where one bone marrow cancer patient whose chemotherapy could not be delayed was worried if they would be able to drive through the curfew in Haryana, India. Another patient was unsure if they would be allowed to fill their medical prescriptions for chemotherapy drugs. Thus, anxiety is currently very strong.
Negativity and the feeling that we are alone in this disease is one of the toughest parts of cancer and continuous emotional counseling is the key to get patients out of this distressful condition. Doctors, health-care staff, social workers, and Patient Guidance Coordinators are the ones who create a bond with the patients and help them believe that they will be able to cope with this stress. Currently, the patients are cut off from this lifeline and have been unable to communicate with these key stakeholders. The emotional trauma, stress, body image issues, and worry about when they will be able to start or resume treatment will have a huge impact on the mindset of the patients.
Access to money, grants, and donations through government schemes, trusts, and various donors are the initial steps for any cancer patient to get treatment. As a result of the lockdown, a lot of these documentation processes and financial planning of patients have been placed on hold. This will further delay their access to availing these schemes, and thus, further, increase their time to access treatment. Not getting access to timely treatment might endanger a lot of lives.
Getting accommodation in major cities like Mumbai and Delhi is always difficult and expensive. Moreover, because of the immediate lockdown, no trains and other means of public transport were available for patients to return to their hometowns. Therefore, a lot of patients who traveled to these cities to access health-care were stranded without resources. The Economic Times brought to light the plight of a family from Jharkhand who were traveling back to their state from Mumbai after finishing treatment at the Tata Memorial Hospital, but were stranded and living on the footpath. The availability of hygienically cooked food was yet another issue faced by this family. Moreover, according to them, there were more than 200 other families without a place to stay and without means to eat. The India Times covered another family with a 13-year-old cancer patient who was traveling on foot to the village of Pushkar in Rajasthan, after being asked to return home by AIIMS because they had no money to stay in Delhi.
A complete 21-day lockdown, public transportation closure, and authorities questioning the reason for traveling have become a complete nightmare for patients to access any type of health-care services. Several patients have been asking for help to reach the hospital. They do not have a private car, and all the other means of transport are closed; they are unable to visit the hospital for their chemotherapy, and hiring an ambulance if there are any available for transport is very expensive.
Medicines and chemotherapy
In general, patients have access to drugs and various prescription medicines through the hospital dispensary. However, because of the lockdown and travel restrictions, many patients who were given prescriptions to obtain certain drugs have been unable to access them. Even those patients who are on active treatment and need chemotherapy and who live in the vicinity of the health-care center have been unable to access chemotherapy. This has led to a break in their treatment and caused a lot of stress to patients and their oncologists. This is of grave concern.
Platelets are tiny blood cells which help stop bleeding. Cancer patients generally have low platelet counts, and hence, a frequent need of cancer patients during treatment is platelet transfusions. In general, hospitals have a steady flow of donors, who donate blood and platelets voluntarily. As a result of the lockdown, there have been no blood or platelet donation camps organized, and voluntary donors are having a hard time reaching the hospitals for donations. Poor platelet stocks could lead to a crisis for cancer patients requiring transfusions at this time of the pandemic.
Unavailability of masks and other hygiene products
Cancer patients due to their immune system being compromised are required to be very vigilant about their hygiene, especially during chemotherapy. A few major precautions against COVID-19 are social distancing, sanitizing hands with alcohol-based sanitizers, washing hands with soap and water, and wearing masks when needed. As early as March 05, 2020, masks and sanitizers were out-of-stock at most pharmacies across the country, and even at e-commerce retailers like Amazon and Flipkart. Most patients expressed concern about their inability to procure masks and were worried whether, without masks, they would be prone to coronavirus infection.
In these uncertain times, nonprofit organizations like GJK and various others are working in concert with hospitals to create awareness and to help patients in the best possible way.
- To deal with and overcome the patient's fear, anxiety, and stress and promote awareness, a team of 13 GJK Patient Guidance Coordinators called, interacted with, and built a rapport with >7000 patients. They inquired about their health and informed them about the risks and precautions to take to avoid coronavirus infection. They listened to their fears, motivated them to call the appropriate hospital numbers if they had major concerns, coordinated with doctors to ensure that certain patients were able to continue receiving treatment, and assured them of support in their journey
- To address the accommodation-related issues, we have been in touch with guest houses and arranged for the stay of a few patients who were stranded in Mumbai
- To solve the problems of transportation for the few patients who were unable to travel because of the lack of private transportation and for those who needed the opinion of a doctor, GJK Patient Guidance Coordinators urged them to make use of an online portal called Navya, a tool through which the patients can receive an expert opinion from the comfort of their homes, thus reducing their risks
- Food, one of the most basic necessities for survival, was arranged through good Samaritans, other nonprofits, and local people
- Getting patients to the hospitals for their active chemotherapy sessions has been the most concerning and challenging task of all, and we are using our resources to arrange for finances and transportation through auto-rickshaws and ambulances for a few patients staying locally
- In addition, to ensure the supply of platelets, 2 GJK Patient Guidance Coordinators have managed to connect with and motivate an average of 14 donors a day to donate platelets in this time of need. They have been provided with an official email from the hospital as a travel permit or proof of them providing an essential service
- Masks and personal protective gear are a concern even for health-care workers. Masks alone cannot guarantee the prevention of COVID-19. We have advised the patients to maintain hygiene and emphasized the need to use a mask when taking care of someone who is infected with coronavirus or if they have symptoms of flu. In the meantime, we have recommended the use of clean cloth as a mask until the masks and sanitizers become available for purchase.
Although, some of our strategies to guide and keep patients calm have worked, some have been unable to help, because of the uncertain and evolving nature of the pandemic, fear of the virus, and lack of information, clarity, and communication with all the stakeholders (government, hospital, oncologists, other nonprofit organizations, individual donors, patients, etc.).
The current situation aptly depicts the phrase, “Caught between a rock and a hard place.” Doctors around the country are finding it difficult to continue to operate OPDs, perform surgeries, and provide essential chemotherapy, due to the fear of virus spread; the prime example is the Delhi State Cancer Institute, where one of the doctors has been found to be infected. On the other hand, the heartbreaking story of a patient in Delhi surfaced whose urgent cancer surgery was delayed leading to her emergency ward visit at AIIMS for pain management. The critical question for doctors and decision-makers still remains, “How do we choose?”
In this scenario, looking at the collateral impact of COVID-19 on cancer patients, we need to look for creative and effective solutions which we can implement as soon as the infection curve flattens, and we reach the postpandemic stage. The issues will range from expediting government schemes to financial approvals, to oncologists figuring out the cancer damage to patients, to scheduling appointments for treatment, accommodation, emotional trauma, and many more; the burden of this will mostly fall on the health-care systems.
To prevent this, I suggest that oncologists, hospital boards, health-care experts, nonprofit foundations, donors, social workers, and government officials should organize a virtual meeting now to discuss the issues of cancer patients, create a timeline, and prioritize specific agendas to solve the issue of the high volume of care which the patients will require post the pandemic. Data analysts and strategy teams can develop a detailed plan to tackle each of these issues. Hospitals could also perform a strengths, weaknesses, opportunities, threats (SWOT) analysis and assign a certain workload according to the results of the analysis to various nonprofit organizations that currently work with them. For example, one organization could be given the work of coordinating accommodation, while others would work with donors and government agencies and social workers to get financial aid.
In my opinion, the time to work in silos is way past; today is the time to leave our own agendas and missions and work together to tackle the collateral damage caused by this pandemic.
Trustees and Entire Team of Gunvati Jagan Nath Kapoor Foundation (GJK) Entire Team of Dr. Kumar Prabhash, Tata Memorial Centre, Mumbai Tata Memorial Centre, Mumbai.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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