Last words: The public awareness campaign on palliative care

#LastWords is a film made for the Indian Association of Palliative Care. Palliative care or end of days care is an alien concept in India with just 1 in 100 patients in need actually getting it. Awareness about this stream is the biggest hurdle and this film is an earnest attempt to bridge this gap and popularise palliative care. The film draws insight from nurses, who happen to be majority who hear the last words of dying patients, rather than their family members. When nurses across India recount the last words they have heard, it not just leaves a lump in the throat, but raises the all- important question-do not the dying deserve dignity? Should not the quality of death be as important as the quality of life? The end is a new beginning in this direction.

New WHO Infographic on Palliative Care

When a child is dying

Despite the progress made in curing children with cancer, we do have children who are not able to get cured. Second-line, third-line, fourth-line, ...., treatment options are available, but the chances of success and cure get slimmer with each extra round of treatment. And, the side-effects add up, the visits to the hospital, the extra costs, it becomes a downward spiral. A time comes in this quest for cure that treatment (and its side effects) are no longer acceptable. This time varies depending on the child, the family, the treating doctor, the cancer, the side-effect, the socio-economic cost and many such factors. There are no easy answers and each child and each situation is different. Earlier this week I came across this story of a 5 year old girl in the US with a progressive neurological disorder. It is in two parts and does make me emotional, both as a doctor and as a parent.
http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/
http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/
I have recently had a child who died after a long battle with her cancer. I have another where the chances of cure are close to zero. At these times, the relationship which one has built with the parents and the child is of utmost importance. What I have realised in my experience is that having a constant and honest dialogue with the family and involving the child where appropriate helps. Just by being there, whether in person, or at the other end of the phone is a relief for families.

Health-Related Quality of Life in Children with Cancer

Historically, outcomes of children with cancer has been measured in terms of mortality, relapses and survival. As these QUANTITATIVE measures of life have improved in resource-rich countries, measurement of QUALITY OF LIFE (QOL) has become standard practice. For various reasons, resource-poor countries including India have under-used and under-reported these outcomes (Ref - Pandey, Psycho-Oncology, June 2004).

A recent paper reports health-related QOL outcomes in children with cancer from a physicians perspective (Ref - Chirivella et al, Indian J Pediatrics, Dec 2009). 45 patients and their physicians were recruited from two centres in Hyderabad. Using questionnaires, the physicians were interviewed for their assessment of the various HRQOL domains (sensation, vision, hearing, speech, mobility, dexterity, emotion, cognition, self-care, pain). Although its primary objective was a feasibility study, it does show an interesting (and not unexpected) observation of the pain domain having one of the lowest and most variable scores. This is in line with the recent report by Human Rights Watch which found that pain relief during palliation was sub-optimal in India.

A brief search of Medline did not reveal any other articles from India looking at health-related QOL in children with cancer. The efforts of the authors of this paper is laudable in this context. I wonder how the authors propose to progress from here?