|Year : 2019 | Volume
| Issue : 2 | Page : 189-190
The wait of expectation
Vidya Viswanath, Leela Digumarti
Department of Palliative Care and Gynaecological Oncology, Homi Bhabha Cancer Hospital and Research Centre, Aganampudi, Visakhapatnam, Andhra Pradesh, India
|Date of Web Publication||2-May-2019|
Department of Palliative Care and Gynaecological Oncology, Homi Bhabha Cancer Hospital and Research Centre, Aganampudi, Visakhapatnam, Andhra Pradesh
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Viswanath V, Digumarti L. The wait of expectation. Indian J Cancer 2019;56:189-90
When Mrs D died at home, we heard about it through the hospice volunteer and expectedly our thoughts drifted to the first time we saw her. What if she was then seen without the support of an oncology team? What if she was seen in a home care setting?
But that evening, 3 years ago, Mrs D had come to the right place for the wrong reason! She was wheeled in breathless and anxious with an intercostal drain to the hospice because she could not afford the charges for supportive care at the hospital that was treating her cancer for the last few months and the option given to her was to go home. She had metastatic ovarian cancer, with pleural effusion and ascites and one well wisher who was our hospice volunteer felt she could spend her last few days more peacefully at the hospice. This was how we started caring for Mrs D. Estranged from her husband 15 years ago, she was accompanied by her mother and her son who was pursuing his engineering course. Her heart's desire was to see her son graduate and get a job. She was short of breath but desperate to live. Would she even survive the night?
That she did and fortunately for her, our oncologist saw her at hospice and opined that she be brought to our cancer center. The gynecologic and medical oncology teams decided about her treatment options, the hospice provided respite care and volunteers garnered to collect funds. The decision making was shared between the family, the oncologists, and palliative care. We understand palliative care integrated into cancer care but here, we were moving her from hospice to the chemotherapy ward! Ethically, she merited disease modifying therapy and had reached the hospice for lack of financial support. It helped that the hospice is a designated supportive care ward where patients are admitted for symptom control, respite care, and end of life care.
In India, with the complex interaction between accessibility, sociocultural factors, and economics in cancer care along with polypharmacy and doctor shopping, being watchful about the rationale for hospice referral is necessary. Coordinating interventions keeping the principles of bioethics in mind is also very important and Mrs D stood out as an example. But this is only possible while working harmoniously with multidisciplinary teams and specialists who respect shared decision making and value patient reported outcomes. Mrs D received this, trusted us and this exchange and team work was a professional high for all of us! That is why palliative care is considered complex and dynamic. It was dramatic in Mrs D's case, but very often we see patients comfortably oscillating between radiotherapy and chemotherapy alongside palliative care for the best outcomes.
Mrs D's example also reiterates that a hospice is not just a place to die. It is a philosophy of care and especially in India, it would be worthwhile to incorporate respite care facilities in centers providing cancer care, so that continuity is maintained and patients do not feel abandoned at any point of time. It would also help the oncology and palliative care team to work in tandem which could in turn improve patient compliance and comfort—a win–win situation for all!
It is the spirit of hospice care that is essential and we can provide it at home or a hospital bed if we have the will and the attitude to accept that we are caring and not curing in about 70% of patients with cancer. When we do accept that, will we find a place for patients where we treat them without abandoning them or wishing they would disappear? Would a grim reminder that we could be in their place be of help?
With her will to live, her response to chemotherapy, her smooth cytoreduction surgery, good symptom control, and support from home and healthcare, it was no surprise that Mrs D thrived. She also ably disproved that palliative care is all about morphine because she needed it sparingly during her course of treatment.
On the personal front, it was all smiles because her son graduated with flying colors, received a University medal followed by a job offer in a Tier 1 city and was well on his way to success. She had lived to see her dream. The hospice volunteers always smiled when they spoke about her, they had worked hard to pool in funds for her treatment and her response was akin to a miracle. She had received help from every quarter and the result was well worth the effort.
We always knew that we were only chasing the tumor and it was a question of time. But in Mrs D's mind, the balance had unwittingly tilted from caution to celebration. Hence, when the tumor recurred 19 months later, she was devastated. However, she was keen and enthusiastic about taking chemotherapy and was platinum-sensitive. But in her second cycle, she had a serious anaphylactic reaction and needed intensive care. As her son was now away, the volunteers had to rally around and pull her through. She recovered in a day but was totally shaken. After counseling, she wished to continue with oral chemotherapy. She felt disheartened and believed that she was being punished and did not deserve all of this. It did not help that everyone who met her tried to tell her, “But you were so lucky to have got so much time!”
She gradually deteriorated and was disheartened. Towards the end, she needed hospice admission. But she was melancholic at the hospice. The place which had renewed her hope and realized her dreams now ceased to give her peace. Her son came back and spent the last two weeks with her. He was torn between getting back to work and staying with her. One day they decided that they would rather go home. Did we fail her or did we enable them to look after her at home? This remains unanswered. We got to know about her death through the hospice volunteer who first brought her there. For all the cheer those months gave her, it is a sad thought that she probably died despondent.
Along with strengthening the belief that team work remains unparalleled, Mrs D also taught us that we could not fulfill all expectations. A sense of proportion and balance is vital. Along with the powerful emotions, patient care brings with it, it is also important to work with detachment and without expectation. Patient expectation too, has no limit and sometimes it is hard to empathize constantly especially when you are triaging suffering all day. Thus, we could benefit with an integrated care model and it always helps to have colleagues to talk, share and write “twogether”!
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Conflicts of interest
There are no conflicts of interest.
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