What happens when there is no one to advocate for a patient?
I was recently told a story about an elderly patient on a medical ward. She was frail, almost 100 years old and spoke no English. She presented with a relatively minor ailment, however, at some point in her hospital admission became severely unwell. Due to a multitude of factors, not in the least her language barrier, her diagnosis was delayed and eventually the decision was made for palliation. She died soon after.
I heard this story from the perspective of someone in allied health who was extremely upset by it. To my surprise, he didn't care when I said that this particular condition was always terminal and palliation was always the outcome. That wasn't the point, according to him. The point, was that because she was non English speaking and had no family around, she slipped through the cracks. The point, he said, was that nobody fought for her.
At first I didn't understand this. How could he honestly believe that no one had fought for her? Like all hospital patients, there were so many people involved in this case - interns, registrars, consultants, medical students, nurses, physiotherapists, occupational therapists, pharmacists, dietitians, social workers - how could no one have fought for her?
On further reflection, this comment really upset me most as a doctor. Isn't that why I'm a doctor? To give my patients the best possible outcomes? Isn't my role in the hospital to fight for my patients? What am I doing as their doctor then, if not fighting for them?
Maybe that is what differentiates a competent doctor from a great doctor. Every doctor knows what the standard treatment, or even the most evidence-based treatment, for pneumonia is. But that's not necessarily the best treatment for a particular patient. Being a brilliant doctor is about understanding the values and attributes of the patient as an individual and being sure that our management aligns with those individual qualities.
For most of our patients, this isn't a problem. The patient will tell us when something isn't right, they will advocate for themselves. For the most part, the patients are involved in the decision making and given the chance to question and even refuse the proposed treatment. Where they can't, as in the case of elderly or otherwise impaired patients, their family takes up this fight on their behalf.
This begs the question though, what if there isn't family to fight for them? Who advocates for our patients when they can't advocate for themselves? Who fights for our patients who, literally or figuratively, don't have a voice?
It's not that doctors aren't giving their patients the best care they can offer. In most cases they are. In most cases, what the doctors believe is the best treatment for the patient is what's right for them. However, in the minority of cases where it's not, we look for feedback from the patient or family to let us know so we can change.
So in that rare case- the 90yo from a nursing home with no family- who makes sure we're right? Who notices that in the week since admission her independence is slipping? Who notices that she's 'just a bit off'?
A patient who doesn't have family should ring alarm bells to us as health professionals. As should any patient who can't communicate due to a disability, a language barrier or their age. These need to be the patients we spend extra time with in ward rounds, and spend extra time thinking about. There is no safety net with them. There is no worried daughter to tell us 'dad isn't his normal self'. There's no one to catch our inevitable mistakes.
These are the patients where it is especially important to ask, if this were my grandad, what would I want done? Would I be happy with this explanation? Would I expect more?
These are also the patients where everyone on the team has the obligation to raise issues with the management plan. A colleague of mine told me of a patient he suspected had lung cancer but never raised it because he was the medical student and none of the doctors gave it a second thought. That patient represented months later with metastatic disease and that colleague has to live with always wondering if there would have been a different outcome if he'd fought for that patient.
These are the cases where a proactive medical student, nurse or allied health professional can make an enormous difference to a patients outcome. Fighting for someone who can't advocate for themselves might make no difference to their outcome, but it might change everything. We miss things as doctors, and we we make mistakes all the time. We need patient advocacy, whether from the patient, family or someone else on the team, to make sure things turn out okay.