A friend in need
PATIENT ADVOCACY FOR AN ENHANCED HEALING EXPERIENCE
MY sisters and I have just been told my father doesn’t have long to live. As we gather around the doctor who had just delivered the painful news, I catch sight of my father at the far end of the ward and my heart breaks. Multiple organ failure, we’re told. There’s nothing they can do. All around us are patients on beds struggling to overcome their illnesses. One man is hooked to a dialysis machine. Another, moans out loud in pain. Yet another, like my father, is unconscious and is attached to a host of machines that seems to keep him alive.
The physician in charge of Medical Ward 8B has been on his feet the whole day. There are so many to attend to, and by evening he looks tired as he zips around the ward talking to patients and attending to their needs with an unwavering smile. In my own grief, I’d forgotten his name. But I remember his face. Ever smiling, the bespectacled doctor attends to my father, and takes his time to talk to us, patiently answering our barrage of questions. My father is neither a statistic nor a disease to be treated. He’s a person with a lifetime of memories behind him, and this unnamed doctor in Tengku Ampuan Rahimah Hospital, Klang is ever mindful of that.
As I relate my experience to Manvir Victor, he leans forward and listens intently. A brief silence ensues after my story ends as he takes his time to respond. “The hospital can be a frightening, intimidating place but the difference was how the doctors treated your father and his family. Your lasting memory is the fact that the doctors involved in your father’s treatment were so kind,” he finally says gently, before adding with conviction: “That’s how patients ought to be treated — with dignity and respect.”
With World Health Day recently celebrated on April 7, it’s perhaps apt that we’re discussing one of the prime advocacies that the World Health Organisation (WHO) is championing — the Patients For Patient Safety programme which is a core priority of the WHO Patient Safety Programme (PSP). The programme supports a global network that brings together patients, families, health-care professionals and policy-makers who work in partnership to improve healthcare safety.
Victor, who currently chairs Patient For Patient Safety Malaysia (PFPSM), explains: “The patients themselves are a repository of critical information. When engaged and empowered, they can play a significant role in ensuring a positive health-care experience. They deserve to be heard, and their complaints taken seriously. More often than
not, healthcare professionals don’t listen enough to their patients.”
My throat constricts as I recall my father’s arduous journey which soon turned to be a long drawn medical nightmare that stretched over three years. His past experiences with doctors had been more traumatic than healing, I admit to Victor. There were medical professionals who treated my father with little sensitivity and reduced him (and us) to frustrated tears. They were impatient, condescending and often ignored his opinions.
The lanky serious-faced man who sits across me nods his head in sympathy. “The entire healthcare system was actually built for the patients,” he remarks bluntly. “It’s unfortunate that we have little say about how it works. Everything was designed by the doctors and healthcare administrators without much input from the most important component — the people who come seeking treatment.” When visiting a doctor, he says, patients expect an empathetic doctor with a listening ear, an accurate diagnosis and timely treatment. “More often than not, a good number of patients encounter the opposite — a flawed health system that lacks the capacity to respond to their needs.”
He understands exactly what my father had been through. “I’ve been there,” he says simply.
AN ARDUOUS JOURNEY
At the height of his success as a popular radio DJ with a drive time show that had hit No.1 in Malaysia with approximately 1.5 million listeners, Victor was dealt with a blow that shattered his world. “I was diagnosed with end stage renal failure,” he recalls. “I was 35, had just gotten married and had a thriving career ahead of me.” His initial encounter with the doctor who gave his prognosis was traumatic. “He was flippant. He told me that my test results were bad and I’d need dialysis as early as next Monday. He pointed to the dialysis machine behind me and asked me to wait outside for the nurse to instruct me further. That’s how I first found out I had kidney failure!”
Victor walked out and never returned. The lack of a bedside manner doesn’t merely hurt people’s feelings, he asserts, but can also interfere with a patient’s care.
‘’If the patients don’t feel comfortable in pursuing questions with the doctor, they don’t learn what they need to know to care for themselves.’’ Thankfully he sought the advice of another more empathetic doctor who journeyed with him in navigating through the complex medical issues he was facing. “He was an absolute Godsend! He explained to me in detail the issues I was going through. This guy was brilliant because in 20 minutes of meeting him, I absolutely trusted him.” It was this same doctor who helped transition Victor into a different life than the one he envisioned for himself.
“Everything changed. I was now going for dialysis every other day. Within a year and a half, I lost close to 20 kilos. During that process, I also developed heart problems,” he says, before adding candidly: “I couldn’t walk a hundred metres without stopping. Not run, walk! I had to stop working, my first marriage fell apart and I soon found myself without hope.”
He reckons that he went on dialysis for about 10 years before hope arrived in form of his wife Melissa. “I met my beautiful wife, I got married again and she decided that she wanted to donate her kidney,” he discloses with a smile. “Eventually we went over to the Kuala Lumpur General Hospital and went through the 9-month process of matching her kidney. We finally did the transplant there.”
The operation was a success. But what amazed Victor more was the team of doctors who attended to them. “We need to sometimes champion the doctors who go beyond the call of duty to engage with their patients,” he remarks. The morning after his transplant, he recalls, he was woken up at 7am by an elderly gentleman. “I heard this friendly voice telling me, ‘Good morning Manvir, my name is Ghazali. I’m here to tell you that your operation has been a success.’ And then he shocks me further by asking me if I had any questions for him, adding that he will leave his number behind with a nurse if I should have any questions later.”
He finds out later that the doctor in question was none other than Datuk Dr Ghazali Ahmad, the head of the Nephrology department in the hospital. “The entire transplant process was made easier for my wife and I, because he along with his team of medical professionals exercised empathy, sensitivity and patience.”
LENDING HOPE
It was during one of his follow-up visits to the hospital, when Victor asked if he could be of any help to them. “I was grateful and wanted to pass it forward. They asked me if I could spend some time talking to a patient who was about to go through a similar transplant operation,” he says. “That’s exactly how it all started.”
When Dr Ghazali was later approached by the Malaysian Society for Quality in Health (MSQH) which is a non-governmental organisation established by the Ministry of Health (MOH) in partnership with the Association of Private Hospitals Malaysia (APHM) and Malaysian Medical Association (MMA), to recommend a patient for the Patient For Patients Safety training programme organised by WHO, he recommended Victor.
Patients For Patient Safety (PFPS), as Victor would soon learn, uses the patient experience as a learning tool and promotes patient leadership and involvement in patient safety efforts at all levels. “A group of patients including myself from various different backgrounds and experiences underwent
this training and eventually decided to form an organisation under the auspice of the MSQH in 2014,” he recounts before adding: “and the rest, as you’d say, is history.”
The 50-year-old businessman is passionate about his new advocacy role. “We talk to hospital administrators and doctors, present viewpoints from the patient’s angle and look at ways we can effect positive changes together. We represent the patient’s voice at medical school councils, on hospital boards, at policy tables and at professional conferences around the world,” says Victor, who will be travelling to Amsterdam in May to speak at an international conference on Quality and Safety.
“In order to make healthcare safe for patients, we need to include their voice every step of the way,” he points out. “Adverse events happen to real people. We are more than a mere statistic, more than just a medical condition,” he adds softly before concluding: “Malaysia already has an efficient healthcare system that reaches 95 per cent of the population within a 5km radius. The next step for us to take is to have a better understanding of patient needs.”
What a patient needs most during his/ her struggle with an illness encompasses much more than just medical treatment as Victor rightfully points out. I’ve learnt this through my own experience with my father.
At the time this article is being written, it would’ve been just 11 days since my father succumbed to his illness. What could have been a traumatic experience for my family and I was made bearable because the doctors at the Klang General Hospital chose to treat my father with dignity. From the Emergency Department to the Medical Wards of 8B and 8C, the team of physicians, including nephrologists and palliative care specialists, strove firstly to save my father, and then later when nothing further could be done, helped us deal with the terrible reality of losing him.
With doctors such as these leading the way in patient healthcare, along with Victor and his band of patients offering valuable insights which healthcare officials might not otherwise see, there’s hope that the sick (along with their caregivers) might find the right answers, comfort and empathy in the healing hands of doctors.
In order to make healthcare safe for patients, we need to include their voice every step of the way. Manvir Victor