Mother knows best – a blog by Dr Abha Agrawal

Summary

Dr Abha Agrawal shares with the hub her family's experience of going into hospital and demonstrates how patients and families can be true partners in patient safety.

Content

My father is a relatively healthy 89-year-old who has always lived in a small town in Northern India with my mother who is 83. He has lived a full and active life, running a successful business, involved in political causes, and has had a very extensive social and family network. He is an avid chess player and, until recently, he was teaching chess to many kids from the neighbourhood. He is known for his Gandhian values that he summarises as ‘simple living and high thinking’.

Recently he developed a myriad of symptoms – social withdrawal, loss of appetite, slow speech, severe generalised weakness, weight loss, and non-specific problems in vision and hearing. My family took him for consultations with various physicians in New Delhi and surrounding cities; he was hospitalised several times for tests and rehabilitation to address his rapidly declining general condition. The blood tests and diagnostic imaging revealed no clear abnormality. Most physicians were dismissive of him and attributed his problems to ‘old-age issues’.

Eventually, he was hospitalised at the All India Institute of Medical Sciences in New Delhi, one of the most advanced tertiary care centres in the country. After almost all the tests coming back normal again, the neurologist gave him a trial of L-dopa (thinking he might have Parkinson's disease, which was ruled out later); however, he developed severe altered mental status and hallucinations as a side effect. So the L-dopa was discontinued after 48 hours.

The next day, a nurse nearly administered L-dopa to my father by mistake. Possibly, the physician didn’t discontinue the order for L-dopa or there was a breakdown in the communication between the physicians and nurses. This hospital does not use commonly prevalent technologies to enhance medication safety, such as computerised physician order entry for medication prescribing or a bedside bar-coded medication administration tool for nurses.

My mother, who is always by his side, refused to allow the nurse to administer L-dopa. My mother is a fragile 83-year-old who received only elementary-level formal education and is not proficient in English, let alone in the pharmacopeia. However, she is very devoted to my father. They have been married for 68 years. Empowered and armed, not with medical knowledge but rather with love and care, she intercepted a potentially serious medical error that might have caused major harm to my father. And she did this in one of the most respected institutions in India in a tough, strong, paternalistic culture where patients and families are expected to be passive recipients of care and not question the authority of the healthcare team.

This incident underscores the indispensable yet significantly underappreciated and underutilised role of patients and families in ensuring the safety of care at the bedside. In fact, the healthcare industry’s lack of focus and initiative in meaningfully engaging patients is considered one of the major gaps in the present state of the global patient safety movement of the last two decades, triggered by the publication of the seminal report, “To Err is Human'' in 1999.[1]  Medical harm is a global issue, and the World Health Organization estimates that 1 out of 10 hospitalised patients suffer from harm as a result of medical errors.

The London Declaration for Patient Safety of 2006 proclaimed: “We, Patients for Patient Safety, envision a different world in which healthcare errors are not harming people. We are partners in the effort to prevent all avoidable harm in healthcare.”[2]

My mother has never set foot in London but embodies the spirit of the London Declaration. She demonstrated that even without any knowledge of the intricacies and complexities of the medical science and healthcare system, patients and families can be true partners in patient safety. They bring the most unique and valuable asset to our quest for patient safety: love and care. As Avendis Donabedian, the father of the healthcare quality movement, put it: “Ultimately, the secret of quality is love…  If you have love, you can then work backward to monitor and improve the system.”[3]

References

1. Institute of Medicine. To Err is Human. Building a Safer Health System. Editors: Kohn LT, Corrigan JM, Donaldson. MS. Washington (DC): National Academies Press (US); 2000.
2. WHO. Patients for Patient Safety. London Declaration; 2006.
3. Mullan F. A Founder of quality assessment encounters a troubled system firsthand. Health Aff 2001;20:137–41.

Further reading on the hub

Blog - "Are you questioning my clinical judgement?” Suppressing parents’ concerns is a serious patient safety risk