Patients, take driver’s seat in your healthcare

Phenny Awiti, 26, has years of experience of living with a chronic condition, having lived with HIV from birth. She is not defined by her condition. Instead, she is living her life and keeps her condition in line because she is the boss.

Talking about her journey on television on World Aids Day (December 1), it was clear that HIV does not define her.

While her story shows that we are making progress in HIV care, we are still struggling with new infections and the most vulnerable group are youth aged 15 to 25 years, who are recording the highest number of new infections.

Nevertheless, we are winning on the HIV management front. Patients are accessing treatment and doing a fine job of adhering to it and this is evident in the drastic reduction in deaths from AIDS-related causes.

TIDE IS TURNING

In the 2000s, 70 per cent of hospital beds were taken up by patients suffering from AIDS-related complications. The tide is turning, but the replacement is not pretty.

Now we are struggling with non-communicable diseases. Diabetes, hypertension, heart disease, stroke and kidney failure are becoming the order of the day. The outcomes are not appealing.

All these are chronic diseases just like HIV, yet death from heart attacks is becoming commonplace. We have new dialysis centres sprouting all over the country and yet we have not met the needs of the patients who need the service.

THE SECRET

The secret in turning the tide, just like we did with HIV, may lie in the care model. HIV care firmly puts the patient in the driver’s seat.

A patient goes through an empowerment process before commencing on treatment. From testing and diagnosis; establishment of the disease baseline; counselling about medication, adherence and side effects; and understanding the role of monitoring and follow-up, the patient is prepared to be the key driver of the process.

HIV patients know their drugs by name and dosage. They can recite their CD4 counts and viral load figures for the past five years without missing a beat. They go everywhere with their medication and will walk into any health institution and request a dosage in the rare event they misplace or lose their bottle. Mothers will cross mountains to ensure their little ones have the full benefit of prevention of mother to child transmission.

ACTIVE PARTICIPATION

These patients lead from the front when it comes to their care. They do not sit back and wait to take instructions from the doctor.

They actively participate in their medical decisions. They will show up at their clinic whenever things do not “feel right” rather than wait to come to hospital in an ambulance. They mind their diet without prompting, manage their lifestyles and plan their future. The success of their care has been pegged on adequate education about their condition, the course of the illness and the consequences of their choices. They have seen how quickly things head south for those who make bad choices. They understand what their lab test results mean and their role in good outcomes.

It is therefore disheartening to see that what has been tested and proven to work is not being applied across board to other chronic illnesses. Mama Paula* is a typical example. She presented in the clinic with abnormal uterine bleeding 10 years after menopause. She underwent appropriate tests and was scheduled for surgery.

However, from the outset, we noted her moderately elevated high blood pressure. On enquiry, she admitted that she did have episodes of high blood pressure that necessitated on and off treatment. She had last taken medication six months prior. Further probing got her daughter all worked up. She went on and on about how her mother did not adhere to treatment and would keep hopping from one doctor to another, trying out faith healing and traditional herbs, just to get out of consistent treatment.

Mama Paula may have been obstinate about treatment but taking time to explain what high blood pressure was all about, how the illness progressed, the role of treatment, the expected complications from non-treatment and what she could do to help her body handle it better, changed her mindset completely. She realised she been making choices about her care based on lack of information.

She willingly saw a physician and was glad to take up medication. Her blood pressure stabilised, allowing her to undergo surgery with minimal risk and tolerate it well.

She recovered and though discharged from our clinic, she continues to see her physician religiously.

She has lost weight and is very strict about her diet. She reminds her daughter about prescription refills and scheduled appointments and tests.

At 63, she knows how to operate her home blood pressure monitor and can tell when the readings are not good. In addition, she is the local self-designated hypertension peer educator in her village, pushing her contemporaries to get screened and to adhere to treatment.

Our diabetic and hypertensive patients need not die. They do not need to live a life sentenced to kidney dialysis, praying for the miracle of a kidney donor. They need not be confined to wheelchairs because of massive strokes. They can minimised the risk of heart attack and sudden death if only we can give these conditions the seriousness they deserve.

To win the war against non-communicable diseases, we must ensure that patients are in charge. They must be sufficiently empowered to take over the reins and guide their care.

This way, they will demand excellence from the care providers. We must be ready to share the role of decision-making with our patients wholly for desired outcomes. After all, they are the ones carrying the burden.