What is the need?
- Progress in the medical field has resulted in better life expectancy (quantity of life) and the lifestyle in metro cities has no space to accommodate people living with compromised quality of life.
- All younger/adult working generation is struggling with their own livelihood, busy in target achievement, earning money, critical time management
- Hospitals simply are not interested in managing patients who are terminally ill, require assisted living, nursing care, and who are waiting for death to arrive.
- Managing such people at home is extremely difficult for various reasons, which are listed below, in a separate paragraph.
- It is a critical, very critical stage, when, forget the life, even death makes mockery, and poor souls are not in position to pray for death.
- 2 to 5 % of senior population, which is increasing day by day, is going through this phase, with no worthy solution, which gives better quality to death.
Why it is difficult to manage such patients at home?
- Lack of helping hands: No one at home, who can take care.
- Lack of space: Such patients need a complete room, more than 200 sq. foot, which is simply not available, being the costliest resource, and seldom planned while purchasing the house
- Non availability of experts in medical and paramedical fields: Commercial availability is costly. Medical home visits are out of trend, paramedics visits are intermittent irregular and unreliable.
- Such patients need day today medical attention, being vulnerable for various ups and downs in health status, infections, many of which are contagious, keeping constant threats on children below 5 years, pregnant females, and other old age people in the vicinity.
- Out of all such patients, 95% need assistance for basic needs like passing urine& stools, having meals, moving around, sometimes even moving in bed. This calls for 3 dedicated people for one day, which is next to difficult.
- Cost incurred are too high: Separate paragraph is dedicated for this.
Cost of managing such patients at home, (if one does not want a compromise):
- Nursing cost: Rs. 300 per shift of 8 hours, making it 900 per day.
- Doctor’s review: Rs. 500/- per visit per day
- Physiotherapy Charges: Rs 400/- per day per visit
- Specialized meals: Rs 300/- per day, including preparation.
- Cost of infrastructure change: Approximately 10000/- for fouler bed, bedside table, table for meals, and small equipment like kidney tray, urine pots, sputum holders, infusion bottle stand, etc.
- Cost of logistics: Cost of ambulance for 2 to 3 hours, Rs 2000/- twice in a month, for specialist’s visit. This cost remains hidden because most of the time home vehicle is used, but cost of the time spent, and difficulty to adjust with specialist’s time schedule remain hidden.
- Approximate total cost reaches to Rs. 65000/- per month, plus investments of space, equipment’s and infrastructure changes.
Why these costs do not appear big, while taking a decision of managing such patients at home?
It is because of three simple reasons, first is emotional burden of keeping loved one away from home, second being ignorance, and the third one is readiness for compromises. So let’s try to look at each one, one by one….
- Emotional burden: It is obvious that people genuinely want to stay with their terminally sick loved one. Their mere existence, is enough, as a mental support. Another aspect is sense of fulfilment. Doing something though costly, and stressful, gives a feeling fulfilment, doing good duties, and lessons to the youngest generation, that giving is important. Quite a few times, burden of society and cultural pressures compel emotionally to manage these patients at home.
- Ignorance: Relatives and Akins seldom know about optimal services needed by such patients to maintain their life with dignity. Experts required, medication times, care of personal hygiene, impending threats of infections and psychological hazards of other vulnerable groups like small children, pregnant females, and other senior citizens, etc are unknown to most of the emotionally charged decision makers. “Costs of services” is another large area of ignorance.
- Readiness for compromises: People usually are ready to make compromises, like calling a nurse from a nursing baeuro. Most of the times, who comes in, is an ayah who is absolutely ignorant about medications, and can only be an attendant. She does not understand signs and symptoms of emergencies which are impending. Another example is skipping physiotherapy which is extremely important aspect of better survival quality. Doctor’s visits become impossible for two things, one is their non-availability, and another is time & cost factor. So these visits are intermittent, and mostly compromised. Specialized meals, is difficult for most of them, as it requires both timely purchases and knowledge of recipes. The list of compromises is endless.