Patient Stories
Together We Face It: Adult Palliative Care
This is a story of a 50 year old man who used to run a small juice centre until he was diagnosed with lung cancer. Apart from cancer, this man also separated from his wife and 2 children due to personal issues. and stayed along with his friends. He was a very active, energetic man very fond of listening to music till the time of diagnosis. Initially the patient complained of chest pain, cough and shortness f breadth. As the disease progressed he developed massive pleural effusion and was admitted in NIMS hospital. As he could not continue further cancer treatment due to financial constraints and lack of family support, he was referred to our hospice. We provided him with a caregiver and also immediately started treating the symptoms of pain, shortness of breadth and severe lymphedema. Our counselors started counselling him and made him aware of the prognosis. Initially, he was very depressed, upset and withdrawn and was also suffering from guilt for his negative qualities which he blamed as the reason for the disease. He gave up on life and was waiting for the ultimate to happen. Our counselors over multiple sessions managed to make him come out of his depression and he expressed his thoughts, concerns, fears and wishes. Eventually, we made him meet his estranged family and also his old acquaintances and friends. We also arranged a trip for him to the place where he ran his juice centre. After spending 84 days in our hospice, we finally breathe his last in a very peaceful manner. This was a classic case where a palliative care team addressed all the dimensions of pain ( physical, emotional, spiritual and psychological ) and succeeded in providing the best of palliative and end of life care.
A 17 year old adolescent boy by name Kumar ( name changed) ailing from the family of barbers in a district town was also pursuing the studies and his dreams of leaving the town graduating from the college and upgrading his life, but fate said otherwise and was diagnosed with osteosarcoma. He was brought to city for treatment, gradually cancer spread. He and his mother ended up in our hospice. The boy lost his ability to walk and became bedridden and leg had to be amputated. Even while his mother was looking after him day and night in our hospice the father took to alcohol to get over the trauma. While the mother and son were in the hospice, his elder sister delivered a baby whom Kumar wanted to visit. We arranged a visit in our vehicle to fulfill his last wish. The mother was under severe pressure from her daughters in laws who were not able to appreciate the condition she was in. Her story is too heart wrenching even to put it in words. Our counselors did their best but, whether she will eventually overcome her grief and live a normal life is difficult to say.
Mrs. Shivani ( name changed), a 23 year old recently married, with a 6 month baby boy was referred to our hospice by the cities leading pulmonologist with a rare progressive lung disease which has no cure. Husband works in the city police force as a constable and was the principal caregiver. Shivani shared her innermost grief and concerns with our counselor, that she knew she was dying, but wanted both her husband and child to be with her and spend last few days with them. But unfortunately that did not happen. Her in laws took away the child with every passing day her husband also began to distance himself from her. These sequence of events caused her more grief and suffering than her eminent death itself. Her desire to experience a little show up for love and affection from her husband remained unfulfilled. Our conselor at least shared her sadness and probably lessened the burden on this young women who eventually passed away.
This is a story of a 45 years old doctor Suchi ( name changed) working in the Government sector got admitted into our hospice after an unsuccessful prolonged cancer treatment for tongue cancer extending over 4 years. She appeared to be a demanding and authoritative person and due to her appearance asserted herself to avail of all our palliative care services. Initially she would express her anger on our staff and get whatever she wanted. As the days went by her condition deteriorated and became weak. She was being looked after by her husband who works in the software sector. One day, in a reflective mood she narrated her story to our counselor. She had fallen in her youth and married against her parents wishes and moved to Hyderabad from the north. As the years went by the couple developed differences which eventually resulted in separation. She admitted to our counselor that her authoritative and dominating nature was a big reason for the separation. By the time she was diagnosed with Cancer Tongue there was nobody to look forward to for help. Her ex-husband came to know of her diagnosis and came back into life. Her biggest solace in the days of distress was the fact that her husband was not only back with her but was caring for her in every need. Thanks to the companionship that she found with counselor in the life that she could share her inner most feelings . Being an educated person, she had come to terms with the fact that she would soon die. We ensured that her end was peaceful and pain free. Her estranged husband came back into her life in the last one month she spent in our hospice and was at her side till she breathed her last. Her last words to our counselor was that her husband needed much more counselling to get over the grief than herself.
An emaciated female Mrs. M aged about 40 years was brought to the Government Cancer Hospital, Hyderabad and abandoned in the premises. The patient who was semi-clad with bones sticking out and half conscious was referred to our hospice for treatment and care. She was transported in our ambulance to the hospice where the doctor and nurses washed and cleaned her, including removal of maggots from her wound around the breast. She was properly clothed and fed. It appeared that, she was an advanced stage cancer patient (of the breast) who was deprived of proper treatment and neglected by her family. After a week of loving care, proper diet and medical treatment, the patient recovered from her traumatic condition and was able to provide details of her family. Our staff then traced out the family and obtained an affidavit from them which authorized us to look after till the end and also perform the funeral rights in the event of her death. She spent about two months in our hospice where she was given quality end of life care and finally passed of peacefully, without pain, and most importantly in dignity. Her funeral rights were also performed by our hospice staff, again, with full respect and dignity to the departed soul. This story exemplifies the kind of service we are provide for the poor populace who cannot afford to get quality palliative and end of life care under the prevalent health care system.
Mrs. S was 50 years old. She was married at a very young age. She has one daughter. The day she was diagnosed with cancer, husband thought she was no more useful for his pleasure and left her and married another lady. S used to work in a hospital as Aaya and bought up her daughter. Her daughter got married. Unfortunately her daughter was attacked by seizures at the time of her delivery, both the baby and her daughter were no more to her and S has become all alone in her life. It took a couple of months for S to come out of these situations. As all this were not enough she was diagnosed with cancer cervix. She used to come to the hospital all alone for treatment. One or two times her sister accompanied her to the hospital and later she was abandoned. Doctors tried their best to cure her disease but due to her aggressive disease S’s general condition started deteriorating day by day and she was not fit to undergo further treatment. She was completely transferred to pain & palliative care for end of life care. The same day we treated for her pain and other symptoms and shifted her to the hospice. She was admitted and the staff in the hospice tried to provide the best palliative and supportive therapy. In the initial days she was moving around in the hospice and later she developed Lymphedema in both the lower limbs and has become for her to move or even get up from the bed and few days later she has become totally bed bound. When S was in the hospice her sister came to see her only once and didn’t even bother to take care of her. When her sister came and S was conscious we have taken consent from her and sister to cremate her and perform funeral rites. During her final days she used to request the staff for food items of her choice. Call it premonition- S requested to be taken to her former house to say good bye to her friends and neighbors. When she came back S had one thousand rupees with her. She donated the amount to our administrator. Finally S left this world and there was a sense of peace on her. Her body was cremated with proper care and dignity and the funeral rites were performed by our staff.
This is the story of Mr. DS . He suffered with advanced Cancer Glottis. He underwent surgery and was left with Tracheostomy. He was referred to palliative care for his pain and tracheostomy care. Wife is the care giver and he has 3 children( girls). They used to live in a small little room which is as small as our wash room. Wife is also a TB patient. He often used to complain of severe pain 10/10 round the neck and difficulty in swallowing and disturbed sleep due to pain and other psychological factors. He was registered for home care as he is the patient from Hyderabad. Home care team used to regularly follow up with the patient trying to address his physical and psychological pain. Divan Shah was a auto driver and he was unable to work to his disease condition. His wife used to go for tailoring work and earn some little money to run the family. Through our organization we used to support the family by providing the basic needs like Rice, Dal, Oil etc for their day to day living. We also admitted in hospice for a couple of days and he was happy when he was at home surrounded by his children. Where as he used to stay in hospice with his wife. The wife was well prepared and explained about his disease condition and his children were too young to understand about their father. One fine day Divan Shah is no more and passed away at home. We also put all his 3 children in a government school. We tried our best to make his end comfortable and peaceful. With the help of donors and well wishers we got his wife a sewing machine so that, she could take care of her children with her lively hood by tailoring by staying at home.
Together We Face It: Children's Palliative Care
Master V, a 4 year old sweet boy came with his mother to MNJIO & RCC in Feb 2019 and diagnosed with Neuroblastoma. He landed in ICU in the first few weeks of his admission with breathlessness. The PPC team was treating him for abdominal pain and knew their background. His mother is a graduate who settled into the role of a home maker taking care of her two children. The father died due to liver failure one year prior to the diagnosis and his family did not want to support them anymore. So the single mother with no work experience with the help of her brother was trying to handle the situation. The mother had many doubts and was struggling with loneliness and the team did their best to never miss following her up.
The child recovered from the ICU episode and went back to taking chemotherapy. But within few months it was evident he was far from getting cured. The reports suggested the same. This is when things got all the more tough for the mother. She has already been away from her 6 year old daughter whom she has sent to a hostel as she felt she needed to spend more energy and time with her son for him to get cured. He lost his vision at this point. To imagine a 4 year old losing his vision- I think they understand the world by looking at it and making connections. He would get startled at the smallest of touch or sound. The team had to work with mother and child to make him physically comfortable and emotionally secure.
Medical Oncology said nothing more to be done and handed him over to Palliative Care completely on 9 July 2019. The team made a plan with mother and the uncle to send the child home for as long as they are comfortable to take care of him in the village. Phone calls were done regularly as part of follow-up. However, as expected soon he worsened and mother was scared to take care of him any more at home. The opted to move the child to the Kukatpally hospice for end of life care on 22 July. The child when brought to hospice was in pain, confusion and still could not see. Medically, he was very challenging because his age and symptoms made assessment and optimization of drugs extremely difficult. Mother was suicidal and kept repeating that she has no reason to go on living if she loses her son.
The hospice team encouraged the mother to bring her daughter to the hospice who loved and missed her younger brother. He recognized his sister, but just kept on clinging to his mother. He passed away two days later pain free, in sleep Aug 7 2019.
In our bereavement follow up we found out mother was learning to be a tailor, currently busy with multiple family events. (Happy ones!) The sibling is crying that the hospice counsellor forgot her and asked her to speak to her.
We are sharing this to reiterate that PPC works not just with their patients but also the family members. Also, death does not just effect the one who is dying but those loved ones around them too.
A 7 year old charming girl life was happily passing with her parents and a brother, who used to help mother in household work. Suddenly, in January 2022 her life has turned topsyturvy. Initially it started with uncontrolled fever and vomiting, seen at a local hospital, they referred to a higher centre. It was difficult situation to the parents who were financially weak background. Finally after running from pillar to post, the child was diagnosed with Tuberculosis, Meningitis and treated in Osmaina and Nioufer children’s hospital. As the child was suffering with pain and other retractable symptoms, she was referred child to our Hospice for symptom management by our team in Niloufer Hospital. Mother went into a deep depression and had lot of spiritual distress with hardly any support from the family. The father meanwhile married the mother’s sister and started neglecting the child. Out staff in the hospice addressed all the symptoms in a holistic manner and succeeded in reliving the child of pain and also in counselling the mother to come to terms with the situation that the child’s disease had landed her in. The mother who expressed suicidal intentions on seeing the suffering of her child and also going through the trauma of her husband abandoning her for her own sister, presented a picture of despair and anguish. Repeated sessions of counselling were required to bring about a semblance of normalsy in her. Our medical team meanwhile saw to it that the child was free from pain and is comfortable. Our counselors also are helping the sibling of this child who had dropped out from school continuing his education.
Master V, a 4 year old sweet boy came with his mother to MNJIO & RCC in Feb 2019 and diagnosed with Neuroblastoma. He landed in ICU in the first few weeks of his admission with breathlessness. The PPC team was treating him for abdominal pain and knew their background. His mother is a graduate who settled into the role of a home maker taking care of her two children. The father died due to liver failure one year prior to the diagnosis and his family did not want to support them anymore. So the single mother with no work experience with the help of her brother was trying to handle the situation. The mother had many doubts and was struggling with loneliness and the team did their best to never miss following her up.
The child recovered from the ICU episode and went back to taking chemotherapy. But within few months it was evident he was far from getting cured. The reports suggested the same. This is when things got all the more tough for the mother. She has already been away from her 6 year old daughter whom she has sent to a hostel as she felt she needed to spend more energy and time with her son for him to get cured. He lost his vision at this point. To imagine a 4 year old losing his vision- I think they understand the world by looking at it and making connections. He would get startled at the smallest of touch or sound. The team had to work with mother and child to make him physically comfortable and emotionally secure.
Medical Oncology said nothing more to be done and handed him over to Palliative Care completely on 9 July 2019. The team made a plan with mother and the uncle to send the child home for as long as they are comfortable to take care of him in the village. Phone calls were done regularly as part of follow-up. However, as expected soon he worsened and mother was scared to take care of him any more at home. The opted to move the child to the Kukatpally hospice for end of life care on 22 July. The child when brought to hospice was in pain, confusion and still could not see. Medically, he was very challenging because his age and symptoms made assessment and optimization of drugs extremely difficult. Mother was suicidal and kept repeating that she has no reason to go on living if she loses her son.
The hospice team encouraged the mother to bring her daughter to the hospice who loved and missed her younger brother. He recognized his sister, but just kept on clinging to his mother. He passed away two days later pain free, in sleep Aug 7 2019.
In our bereavement follow up we found out mother was learning to be a tailor, currently busy with multiple family events. (Happy ones!) The sibling is crying that the hospice counsellor forgot her and asked her to speak to her.
We are sharing this to reiterate that PPC works not just with their patients but also the family members. Also, death does not just effect the one who is dying but those loved ones around them too.
This is the story of Priya, a 2-year-old diagnosed with the life-limiting illness CD19 deficiency. Despite her young age, she faced a prolonged hospital stay and intensive medical treatments. Our palliative care team aimed to build a close, supportive relationship with Priya and her family from the first encounter.
We visited Priya daily in the hospital, witnessing the immense strain her illness placed on her parents as they balanced her care with looking after their other children. Her father even switched to night shifts to be by Priya’s side. We provided emotional support, addressed her symptoms, and helped guide them through difficult feelings and decisions.
As Priya’s condition worsened, we developed a comprehensive care plan and prepared the family for what might lie ahead. Despite her illness, Priya remained joyful, mimicking medical procedures and finding delight in simple pleasures like drinking tea and having her nails painted. These moments brought rays of light during a dark time.
We supported the family emotionally and logistically, reminding them of appointments and facilitating consultations with Priya’s medical team. After celebrating her 3rd birthday, a milestone they feared she might not reach, Priya passed away peacefully at home, surrounded by loved ones and the comforting medications our team had provided.
The grief was profound, but her parents found solace in remembering Priya’s vibrant spirit and strength. We continued making bereavement visits, sharing memories, tears, and laughs about the little girl who had touched all our lives.
From the beginning, we focused on forming a connection with Priya and her parents, offering a listening ear as they grappled with the overwhelming realities of her diagnosis. Our team became their lifeline amidst the relentless medical routine.
Even in the hospital, frail little Priya would greet us with a smile, playing games, pretending to be a nurse, and giggling as we painted each other’s nails. Her joy and resilience were truly inspirational.
As time went on, we had to guide them through unbearably difficult conversations about Priya’s prognosis and developing care plans should she need a ventilator or face other challenges. But we always prioritized her comfort above all else.
When Priya was able to go home, our support extended there as well. We visited weekly, ensuring her medications relieved any discomfort, coordinating appointments, and even assisting with getting care for her mother. Even while dependent on oxygen, Priya remained spirited, delighting us with her dances, laughter, and impressive understanding of medical terms. Her acceptance of her condition was both heart-warming and inspiring.
The bond we formed with Priya and her incredible family was unlike any other. We witnessed her incredible spirit in the face of such adversity. Her parents expressed profound gratitude, telling us “You were always there for us. Your kindness helped us navigate this painful journey.”
Priya’s story demonstrates the true impact of paediatric palliative care. It’s not just about medicine, but about providing compassionate support, ensuring dignity, and helping families make the most of their precious time together when facing a serious illness. For us, being part of Priya’s journey was both heart-breaking and profoundly inspiring at the same time. We were honoured to support this brave little girl and her loved ones during one of life’s most challenging experiences.
Asma, an 11-year-old full of life, was diagnosed with a brain tumour. Treatment was aggressive – surgery, radiation, and chemotherapy. As her discharge from the hospital neared, the world went into lockdown due to the pandemic. This unexpected crisis left Asma’s father feeling helpless about her care at home.
Our PPC team’s first visit proved to be a turning point. We provided essential medication and managed Asma’s postoperative symptoms, a critical lifeline amidst the lockdown’s isolation. For two months, Asma thrived at home with our regular visits, a source of comfort and care for both her and her family.
Sadly, Asma’s tumor recurred, leading to another hospital visit. After discussions with oncologists, Asma and her parents chose comfort care, prioritizing her well-being over further interventions. They placed their trust in our team for weekly high-priority visits at home.
Asma, despite her illness, remained a cheerful child. She eagerly awaited our visits, even preparing her room and dressing up for them. We witnessed her strength and resilience as she battled her condition. She held our team in high regard, stating, “You are good doctors. You don’t poke or hurt anyone.” Our visits became a safe space for her to express herself, and she often called us whenever she felt discomfort.
Over time, Asma’s symptoms gradually increased, requiring medication adjustments for headaches, nausea, and other discomforts. Despite this, her spirit never completely dimmed. She interacted with us, even insisting on taking pictures together. We witnessed her emotional swings, offering empathetic support and allowing her to express her feelings freely.
As Asma’s condition worsened, our frequency of visits increased. A particularly poignant visit stands out – her room was silent, and Asma lay unresponsive. We shifted our goals to managing her bed-bound care, counselling her parents through this difficult transition.
Tragically, Asma’s father was then diagnosed with a brain tumour and passed away shortly after. Our team provided bereavement support, helping Asma’s mother cope with this devastating loss. Despite her grief, she found strength to care for her daughter, taking solace in the fact that Asma remained unaware of her father’s passing.
Our visits continued, focusing on managing Asma’s bedsores, tube feeds, and medications. We empowered Asma’s mother to become financially independent while preparing her for Asma’s likely decline in the coming months. We established an advance care plan, honouring Asma’s wish to stay at home.
Asma’s mother expressed her deep gratitude for our unwavering support. Despite her daughter’s bedridden state, we continue our weekly visits. These visits now serve a different purpose – we refill Asma’s pain medication, reminisce with her mother about happier times, and provide emotional support during this anticipated loss.
Asma’s story exemplifies the dedication of our PPC team. We are committed to supporting children and their families throughout their journeys, providing compassionate care that adapts to their evolving needs.
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