A helping hand may not always be a welcome gesture, but that should not stop us from extending our support when required. This is one such experience that I came across.
One evening as we were about to call it a day, we received a call from the ER for a young girl who was breathless and in pain. The referral was for terminal care and the palliative team was going to be seeing her for the first time!
As I entered the ER, I witnessed a distressed child who was sitting, leaning forwards, and tightly holding her mother’s arm with her face covered by the oxygen mask but still gasping for air. I needed no further introduction as my mind was already working out strategies to help the child.
I went through her records and found that she was diagnosed with metastatic osteosarcoma despite surgery and multiple lines of chemotherapy. I swiftly examined her and asked a few questions to which she responded in sign language. I immediately asked the nurse to give her the magic drug “MORPHINE” to help reduce her pain and air hunger. As expected, she began to relax, and with some trepidation, I began speaking with her father as she was clinging to her mother. Her father said he knew about her disease and that they only wanted for her to be comfortable till her last breath. I silently heaved a sigh of relief that I could actually focus upon what was important to the child and her family. When I asked the father what the patient knew about her disease, he replied in a low voice, “She knows; but we never talk about it”. Noticing that the patient was in no condition to have a conversation, I chose not to dig deeper at the time.
The parents were curious to try alternative medicine, but we decided to revisit this once the child felt better. The father informed me that they wanted to take her home as soon as possible. “She always feels better when we go back home. Even through her chemotherapy, she tried to be more at home rather than the hospital”, said the father. I felt that the child needed better symptom control and began to coax the father to consider continuing care in the hospital. He was however firm in his decision of wanting to go home. As a physician, it is our responsibility to ensure the continuity of care post discharge. It is for us to communicate meaningfully and effectively with the patient and their family and guide them towards making informed decisions. I therefore suggested hospice care, but the father stood steadfast in his choice of going home at the earliest sign of symptom alleviation.
We mutually agreed upon continuing care in the hospital followed by care at home. After a fruitful discussion and after the magic drug had done its job, I was able to reduce the need for oxygen. As I was writing the orders in her records, I asked the nurse about the weight of the child, and I heard the child reply in a confident and bold voice. This incident indicated how attentive and aware she was. Now, I understood why the father had informed me that she knows about her disease.
The next day I visited her in the ward, and she appeared comfortable without oxygen support. While the oncology team were in discussion with her parents about the merits and burden of further blood tests given her advanced disease, the child again had an episode of breathlessness. Seeing her rapidly fluctuating clinical condition the family got agitated and wanted to leave.
I counselled the parents again and reiterated the goals of care such as to provide maximum comfort for as long as she was alive. I explained the practical steps to ensure that she was comfortable at home, gave them enough medications and also shared with them a crisis plan. We offered to visit their home but they refused us flatly. Nevertheless, I shared with them the contact number of the pain and palliative care team and asked them to reach out to us whenever they felt the need for support.
As per our protocol we made a follow-up call in a few days. The father gave us a terse reply and hung up. We continued to follow up on her every few days and expressed our willingness to help, should they need it. Lo and behold, they reached out to us one day asking for help and one of our staff provided them with the instructions that were needed. The next day they called asking for me to manage new problems. The child had developed a pressure sore and was in pain. A detailed care plan for the management of pressure sore was provided immediately by my nursing team. We offered to again visit the child only to be turned down again. At this point, I started wondering what might be the reason for their denial. Could it be social reasons? Or was it the child’s wish? Or maybe possibly the parent’s fear? From experience, I know that for most of our patients, it is the stigma associated with cancer and the fact that they don’t want to be looked down upon in their community.
That evening as we were finishing up for the day, my nurse came running to me to inform me that there was an emergency call from her father. I then learnt that she had passed on. I expressed my condolences and asked her father if he had got the ‘Medical Certificate for Cause of Death’. He was in a state of panic and said they were denied a death certificate at two hospitals. I calmed him down and assured him that the certificate would be provided by our team. I initially thought of asking them to send a relative to collect the same, but I quickly offered to drop it off at their home on my way back to my home.
I heard the sigh of relief in his voice and this time he willingly accepted my support. We were able to finally support the child and her family in an unconventional way… “To provide care until death and beyond”. Thus far, our home bereavement support services were provided for only those patients that we had visited at home. This time, we made an exception as he also willingly accepted our support.
Upon reflection, I realize that though there was a lot of resistance, our team chose to go that extra mile to ensure that we helped the child and her family in a manner that was acceptable and needed for them.
About the Author:
Dr J Daniel Raj is a Palliative Care Physician at the Department of Anaesthesia, Pain and Palliative Care, Cancer Institute (WIA), Adyar, Chennai.
2. This collection is a short collection of reflections which aims to encapsulate the heart and soul of dedicated individuals, who have embarked on a journey to provide compassionate palliative care to their patients and their families. With each reflection, the IAPC strives to present a deeper understanding of the value of dignity and the immense impact these compassionate individuals have had on those receiving care from them.
The initiative wishes to not only highlight the pivotal role of the members of a palliative care team, but also serve a reminder that to be able to provision quality palliative care, one needs to transcend and expand the medical realm to also include the realms of emotional, psychological and spiritual care.
The IAPC thanks each of our Authors for graciously sharing their experiences, thoughts, wisdom and also their vulnerability thorough their stories.
Thank you for reading these heartfelt stories which are rich in experiences and full of insights, as they illustrate the multidimensional nature of palliative care.
This article is Story #6 of 8 from the collection.