A friend called a couple of days ago, after a gap of several months, informing that her life has suddenly become very busy and unpredictable. A family member is terminally ill and so she is taking care of their child, in addition to her own. She is also rescheduling her work life along with her spouse, to actively care for the person who is suffering. As a result, she has no social life, along with cutting down on better growth opportunities at work… indefinitely. We may all plan our lives, but life’s learnings have other plans for us.
In spite of best hospitals and advanced medical care, we all have at some point of our lives cared for sick family members or relatives either for long term or short term or like my friend for an extended indefinite term. Unpaid contributions of family caregivers were valued at as much as US$450 billion in 2009 globally , and two thirds of these care givers were women with additional jobs outside home. Similarly, in India, the total unpaid contribution in health at home in 2010 by women was US$ 22 billion and by men US$ 5 billion (at a minimum wage rate). For the care seeker, family-based care is cheap, home based and in familiar surroundings. For the care giver, it will incur time management, resource mobilization (leaves at work, salary revisions) and sometimes (maybe often) mental hardship. But perhaps the biggest issue here is that no one tells, teaches or trains us of the right ways to take care of our own family members in times of need.
At a time when there is a definite shift in global disease profile from communicable (infectious diseases) to non- communicable diseases like diabetes, cancer or cardiovascular and injuries; family-based care can keep the healthy out of hospitals and those at risk out of sudden need of treatment (and sky high health expenses). Could family care be an integrated process just like sitting together and having tea in the family room in the evenings and politely reminding everyone of the daily medication schedules, quantity of medicine left for consumption in the house, doctor appointments, designated drivers or transport for the appointments etc? Could there be someone designated as the leader for providing this care within the family? How well would other family members accept this designated family health provider? Is there a possibility for this designated member to be trained in providing a first response to emergency care, identifying key symptoms, understanding when to reach out to a healthcare facility?
Both my maternal aunt and her husband were bedridden for long periods until their sad demise. My cousin took care of them, all alone though and it took its toll on him. But he had to learn a lot of ways through his life’s learning in palliative care- by observation, reading and talking to medical professionals within his community, to understand what was expected of him before he could chalk out a customized care system. I cannot say that anyone in my family of my parents, myself and my child is equipped at this moment to even identify symptoms that may lead to a near future health catastrophe at home, let alone what to do in case of an emergency. Like everything else in life, perhaps health of family members should not be left out to adhoc arrangements.
There are states in India where best practices, pilot projects and examples of successful family based care exist, however, unfortunately, health policies or even guidelines in primary healthcare systems omit this most important area of healthcare. If family and community-based healthcare is made stronger, and well connected with health facilities and medical practitioners, much of our health expenses could be reduced. In a country where the out of pocket expenses in healthcare are the highest in the world and families are pushed into poverty each day due to medical expenses, family-based care could perhaps help us in many ways. For one, knowing someone in the family is a designated care giver and formally trained (beyond google!) to respond during an emergency situation would help me sleep well!
 Ana Langer et.al. Women and Health: The key for sustainable development (2016). The Lancet Commissions, Vol386, September 19.