Iqbal,* 35, was diagnosed with terminal lung cancer in 2022. Beyond the physical and mental toll of his illness, he and his family had a lot of decisions to make. His wife, Neena,* would soon become the primary breadwinner and caregiver to their two young children. Iqbal hadn’t prepared a will, and his assets were in limbo. Moreover, he did not wish to inform his parents of his prognosis because of a strained relationship with them.
Iqbal was our patient in 2023. Our team consisting of one doctor, two nurses, and a counsellor visited him to evaluate what kind of support we could offer. The doctor assessed his symptoms and drew up a care plan. Since Iqbal was partially bed-bound, the nurse taught him how to manage his skincare and oral care. The counsellor listened to the couple’s emotional needs, including concerns around breaking the news to their young children. Neena was in a state of emotional turmoil; Iqbal himself was going through depression and refused to take his medications. When he finally agreed to inform his parents, he did not want to do it himself. So, we sat with his parents for four hours to explain his prognosis, answer their questions, and help them navigate the complex emotions they were feeling.
We met the family on alternate days, providing them medical and psychosocial support to grapple with the situation. We also provided them a legal contact who could help with handling their assets.
This is a day in our lives.
We, Shruti and Ankita, work as a counsellor and a nurse respectively in Mumbai. We’re part of a medical team at Palcare—a service provided by the Jimmy S Bilimoria Foundation that works on providing home-based palliative care services to patients with life-limiting and debilitating conditions so they may lead a pain-free, comfortable, and emotionally stable life. We are one of nine teams working in the city, and our team directly engages with 50–60 patients. We predominantly receive patient referrals from oncology departments, in addition to online and word-of-mouth referrals. Most of our patients are people with end-stage cancer.
07.00 AM
Shruti: I wake up between 7 and 7.30 am, make breakfast, and get ready for the day. I live with my husband. I shifted to Mumbai from Kolkata when I was 17 to pursue an education in psychology, and I have been here ever since. No one in my family is in the field of medicine, but I wanted to study psychology after I was introduced to it in school. The insight into human emotions and personalities, especially when our brain feels in crisis, were and continue to be deeply interesting to me.
As I was completing my master’s in clinical psychology in 2022, a recruiter visited our university and told us about psycho-oncology—an interdisciplinary field in cancer care that studies the patient’s and their family’s emotional, behavioural, and social needs.
In serious illnesses, palliative care should begin early and alongside curative treatment because it helps with symptom control and pain management.
It was during this time that I learned about palliative care. There are still a lot of misconceptions about it. My own family has developed a much stronger understanding of palliative care over time. When I first started, none of my relatives knew what it was—they would ask why I wanted to be in this field at all, why I wished to provide counselling to people ‘who were going to die’, and why I would want to go to other people’s homes for this.
People associate illnesses such as cancer with a hospital or hospice; there is also an assumption that palliative care is only for end of life. But this is not true. In serious illnesses, palliative care should begin early and alongside curative treatment because it helps with symptom control and pain management, and assists patients and families in making informed decisions.
That being said, a terminal illness can be one of the most intense and complex stressors for a patient and their family. When a case is curative, the conversations tend to be more hopeful, which helps people cope. But what do you do when a patient has a month or a year to live? How do you support them and their families in facing this reality?
These are conversations that we have every day. Every morning, Ankita and I meet at a train station between 9 and 9.30 am to start the day’s visits to our patient’s houses.
Ankita: I wake up at around 7 am to get ready for the day. I live with my family. My father is retired, my mother is a homemaker, and my sister works as an accountant. After completing class 12, I was clear that I wanted to pursue medicine. But I was unsure whether I wanted to be a doctor or a nurse. Two of my relatives are nurses, so my mother advised me to take up the same profession.
I worked in hospitals for two years. During the COVID-19 pandemic, one of my friends introduced me to palliative care. After joining Palcare, I went through internal and external trainings to learn techniques specific to palliative care. Our work isn’t just about providing treatment; it’s also about providing care. It includes communicating with compassion and dedication; managing common symptoms such as pressure sores, nausea, breathlessness, restlessness, and lymphedema; and training the primary caregiver on the same.
Having worked in palliative care for more than five years, I’m glad about my decision today. Taking care of people and providing them relief brings me incredible joy.
After I get ready in the morning, I leave to meet Shruti by 9 am.
09.00 AM
Shruti and Ankita: Each day looks different. Since it is not possible, and often not necessary, for us to see each patient every day, we categorise them as ‘low’, ‘medium’, and ‘high’ priority based on their medical condition and plan our visits accordingly. We make this assessment on a daily basis by evaluating different needs, keeping it flexible and accounting for the patient’s and the family’s requirements. For instance, while a patient might be doing well physically, they or their family might require emotional support, making them low priority with regard to physical symptoms but still requiring follow-ups. In this case, Shruti will visit them more often, as opposed to a patient who needs help managing physical symptoms, where Ankita provides more hands-on support.
The first time we visit a patient to initiate care is the most intensive. We record the patient’s medical history and the doctor, nurses, and counsellor explain their roles to the family. We describe what home-based palliative care entails—how support runs parallel to treatment, how the symptom burden can be eased, and what counselling looks like.
If a patient is nearing end of life, we prepare them and their families on how best to provide care. If the patient is in unbearable pain, we educate the families on the importance and safe use of opioids such as morphine. This includes addressing any fears or hesitations, and clearly explaining potential side effects including an initial period of drowsiness.
In cases where families need financial support, we also connect them to other nonprofits.
We check in with our patients and their families consistently and keep the team updated. Even when patients start getting better, we keep in touch with them for at least one to two years to check for remission or any other complications.
Every Monday, our team discusses any concerns about particular cases, evaluates the priority status for each patient, and plans for the week ahead.
Shruti: While each member on our team has a distinct role, it’s important for us to coordinate with one another, the patient’s family, and the primary doctor to understand the trajectory of the patient’s illness. For instance, it is common for a patient with late-stage liver cancer to experience hallucinations. If I’m unaware of the disease progression, I might mistake their symptoms for psychosis—which would be a false analysis.
Ankita: We have a responsibility towards the patient and their family, and we often have to strike a balance between the two. This is particularly important in cases where a patient is not aware of the full extent of their illness and prognosis. This is the primary information we establish with caregivers before conducting our first visit to the patient’s home. Families withhold details of the patient’s condition from them for many reasons, such as to protect the patient from further pain and anxiety. Sometimes, this is also a coping mechanism for the family. Our role is not to judge but to offer support.
Shruti: While we work with the family as a whole, we place the patient’s autonomy at the centre. We follow the ‘ask-tell-ask’ approach with a patient: understand what they already know and how much they wish to know; share information accordingly; and finally assess what they have comprehended as well as their emotional response. This ensures that the conversation remains patient-centric and sensitive.
It is important to provide families the psychological and emotional tools needed to deal with the loss of a loved one suffering from illness.
In one of our cases, a 50-year-old man had buccal mucosa cancer, but his family told him he had a complicated ulcer due to diabetes. They feared that telling him the truth would break his spirit and cause him to ‘die early’. The treating doctor, too, had not revealed the diagnosis to the patient. During our visits, the patient often expressed frustration and would ask why the ulcer wasn’t healing even though he was undergoing treatment and taking so many medications. Here, we sat with family members individually and asked them to express what they imagined would happen when the news was broken to him.
Often, families don’t know how to manage the aftermath of disclosure. They can feel overwhelmed as they balance their jobs, home life, and caregiving. If the patient’s mental health suffers in addition to the illness, they don’t feel equipped to handle it. In such circumstances, our job is to help the family process information about the illness, and communicate it to the patient.
Here is an example we use: Imagine you find yourself in a boxing match that no one has informed you about beforehand. Think about how surprising that first blow is going to be, how unprepared you would be.
If a person knows that they are dying, they might want to prepare for it—meet friends they haven’t met in a long time, mend ties, leave something behind for friends and family. All of this needs time, however limited, to plan.
It is also important to provide families the psychological and emotional tools needed to deal with the loss of a loved one suffering from illness. In such cases, we do a minimum of three bereavement visits with the family to evaluate their condition and understand if they are coping or if they have complicated grief. We break down these feelings with them and even refer them to a psychiatrist if needed.
01.00 PM
Shruti and Ankita: Depending on the condition of the patients and their families, it can take us anywhere between one and four hours per home visit. We do three to five visits in a day and squeeze in a quick lunch break in between. This is usually the time where we check in with each other about how we’re dealing with intense situations. Are we experiencing burnout or anxiety? Are we particularly affected by a case? If we need emotional support, Palcare has a psychologist available. A combination of peer support, open communication, regular meetings, shared social time, and personal self-care practices helps us manage burnout and continue providing care with compassion, without being overwhelmed.
We also have sessions every Wednesday with all the zonal teams to learn about new topics and issues related to palliative care. And every Thursday, we hold meetings to discuss difficult cases and to learn from one another.
Between home visits and online meetings, we don’t have to visit the office regularly. We do it mostly for documentation or to collect certain medicines that we provide to patients free of cost.
6.30 PM
Shruti and Ankita: We start wrapping up work by 5.30 pm. After going home, we log all the case details and any updates from the day into a software.
Shruti: I have a few daily rituals that help me unwind. Once I get home, I take a shower and imagine washing off the day’s worries and difficulties. Then, I take a nap so there is a break between my personal and professional life. If I’ve had a particularly heavy day, I share it with my husband or another family member.
I also love playing instruments, drawing mandalas, and journaling to achieve a state of calm.
Ankita: I take a shower and a nap after reaching home. I assist my mother with household responsibilities, including cooking and other chores. At times, I accompany her for shopping, which gives us a chance to spend meaningful time together. I make it a point to share the events of my day with her, as it brings me comfort and strengthens our bond. I often speak to my best friend, which helps me relax. After having dinner, I spend some time watching a web series on my phone, and then I go to bed.
However, I often receive calls at odd hours of the night. If a patient’s condition suddenly deteriorates or if a caregiver has to unexpectedly administer medication, they reach out in panic. I speak to them over a video call if needed or connect them to their local doctor. Based on the situation, I assure the family that we’ll visit them the next day.
As palliative care providers, our job is to help patients and families face illness, loss, and uncertainty with dignity and support. Such care takes both time and trust.
*Names changed to maintain confidentiality.
Feature picture courtesy: Francois Decaillet via Flickr/CC BY.
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Know more
- Understand the importance of palliative care in symptom management and improving quality of life for patients with serious illnesses.
- Learn more about the psychosocial needs of patients in palliative care.
- Read about the challenges and experiences of family caregivers of patients with terminal illnesses.
