The survey form has the right question: ‘is the person bed-bound?’ ‘She was not, ’ I said in my head. How could she be bed-bound without a bed!! 72-year-old Ramrati had a stroke more than a year ago. She now no longer walks but drags her body towards a nearby open area for defecation. As she can’t use the right side of her body, the left side is used as an engine to propel the whole body towards an area marked for defecation in an open defecation-free village. She does the same when she has to bathe or move from one room to another. The physical pain of doing this several times a day and the emotional pain of the indignity at the intersection of her illness and her social situation were felt but not captured by the survey.
The experience, though unsettling, helps question ‘my failure of imagination’ of what is needed and what is possible when it comes to healthcare for the most marginalised. Different estimates tell us different numbers of people who are ‘bed-bound’. One large study among the elderly (age>60) tells us this could be 2.5%. Estimates from researchers working in palliative care give us a number of 0.4% for all age groups, all with different illnesses. But are they ‘bed-bound’ or ‘floor-bound’?
We did a house-to-house census survey from December 2025-January 2026 in 27 community program villages around one of our clinics (Amgasi clinic in Lakhanpur block of Surguja) from which our health workers were selected. More than 4000 households and 20000 individuals were mapped through this exercise. One of the questions we asked in the survey from all families was, ‘Was there someone who was bedbound? Is there someone who is not able to do Activities of Daily Living (ADL), which is- to walk, feed, bathe or use the toilet by themselves? Is there someone who is not able to work for a living in their family due to an illness/disability?’ If the answer to these questions was a ‘yes ’, we recorded their name, age and address. They were then visited by a team of doctors and a nurse for a detailed survey to gather more information about their condition and support their needs as part of a palliative care program. This could be medical needs (medicines or lab tests), assist devices (like commode chair, walker, wheel chair etc.), social support (which includes but not limited to access to social entitlements like pension, ration, health insurance etc.) and others (which could be a food basket to address hunger, linking kids in the family to formal education or supporting vocational training or job opportunity for a family member). I was one of the two people who visited them in the second round.
Most of the people who were identified through this survey were floor-bound. While medical literature in general and palliative care in particular has scores of publications on people who are bed-bound or bed-ridden and is a commonly used term, our survey showed the class bias inherent in this term. In rural India, having a bed or a cot is a luxury few could afford. People in general do not have beds to sleep or rest. Their floor is where they retire for the day. If someone has a serious illness like Ramrati, the bed or a cot continues to be a scarce resource. Something which would have meant dignity, care and some ease in doing her ADLs. This severely limits her and her caregivers’ ability to support her in a way considered humane and dignified. Several questions ran through my mind with no easy answers-
- ‘Bed-bound’ or ‘floor-bound’- who gets to decide what label to use? Doesn’t the label assume availability and use of a bed? Does it not lead to a (false) assumption that the ones with a bed will need palliative care and thus are largely urban and/or belonging to a certain class? I was perched comfortably on the shoulders of those who coined and used the term bed-bound/bed-ridden before me.
- The politics of language in our day-to-day discourse- how does it impact what terms we use- ‘ palliative care patients’ or ‘people with palliative care needs’? ‘Bed-bound’ or ‘floor bound’? ‘tribal’ or ‘adivasi’? Who, what and how do we invisibilise, at what costs and consequences? One can argue that- a) does it really matter what term is used, b) isn’t this progress that at least they are being counted and talked about, something which wasn’t happening previously. All these arguments largely reflect the scarcity mindset, an attempt to rationalise the hypocrisy of what we choose for ourselves and what is needed for those we serve. Any attempt to address the present inequity and the historical injustice needs that acknowledgement and the consequent change in language, without which all changes are at best cosmetic and at worst perpetuate the inequity.
- Bed or a cot as a public health intervention- can a bed or a cot be an intervention for the communities we work with? Here are some of the ways it can help people with palliative care needs- dignified care for people, fall prevention and reduced caregiver burden. It can also help people in general. Snake bite prevention, especially for ‘common krait’, a snake that kills too often by paralyzing our breathing muscles biting its victim in their homes while they are sleeping can be averted by promoting the use of a cot or a bed for all.
I am sure there must be several such things and concepts considered necessities for us and luxury for the poor or those we claim to work for. This dichotomy drives public health work, resources and language we use to justify this. In our hurry to solve a problem for others, we often fail to spend time grappling with this lingering uncomfortable feeling, long enough to understand stories, lived experiences and language associated with them, which is often seen as a matter of fact but seldom appreciated and rarely acted upon. They are powerful and drive many of our actions, often subconsciously. ‘Ramrati was floor-bound. She and her family needed a bed or a cot to take care of her, ’ I noted in her form.
– Chetanya Malik