Many doctors don't trust caregivers, but here's why they should: Dr. Brian Goldman

*A passage from Dr. Brian Goldman's essay, featured in this week's episode on caregivers. 

As a physician for more than 30 years, I've been steeped in medical culture. As the host of White Coat, Black Art, I explain and unpack that culture.

In my experience, it's rare to find a doctor, nurse, or any healthcare worker who truly understands and appreciates what caregivers do for family members.  ​

At best, we see caregivers as an extension of the patient. We think of them as a "living" crutch, or the patient's external brain. That's what most doctors want caregivers to be.

When the patient is discharged from hospital with a complicated set of new diagnoses and a dozen new prescriptions, the caregiver is responsible for making sure the prescriptions are filled and the patient takes them as directed.  

If the diagnosis is cancer, the patient is given a complex schedule of appointments for biopsies, staging CT scans and meetings to discuss surgery, chemo and radiation. The caregiver may have to take hours and even days off their own jobs to make sure their loved one gets to their appointments on time.  

At worst, the healthcare team see caregivers who advocate for their loved ones as a nuisance. If caregivers complain to the doctor, they may be met with defensiveness and pushback.- Dr. Brian Goldman

There are several reasons why doctors treat caregivers this way. Many of them are systemic issues, not the fault of individual doctors. One factor is time pressure. Patients are older, sicker and more complex than ever. Medical knowledge is also growing rapidly, and with it more things doctors need to master.

Almost every time I see a patient, I'm thinking about other things I should be taking care of at the same time.

Feeling that constant pressure of a ticking clock means I need every encounter with patients to go as quick and as smooth as possible.  When a caregiver makes things go easier, they're a great asset to healthcare providers. When they don't, we get frustrated.

Burnout is another factor. As we've heard in the news lately, a third to half of all doctors have at least some symptoms of burnout.

Doctors don't value caregivers because it's a "soft skill", like cooking and cleaning. Society doesn't pay family members for doing those jobs, just as it doesn't pay for caregiving. It's likely that there's more than a bit of sexism in the way caregiving is devalued by doctors. We've heard lately that women doctors advance less quickly and are paid less than their male counterparts.

It's not just doctors. Society itself doesn't value caregivers.  You can see it in who we pay, and how much we pay them.

In general, caregivers aren't supposed to get paid.  They do it out of love, a sense of obligation or some combination of the two.

By contrast, a care provider gets paid to take care of patients or clients as a job, career or profession. Doctors get paid handsomely. Nurses get a relatively decent hourly wage. Personal support workers or personal care aides – who provide the bulk of care for seniors – are paid as little as 12 to 15 dollars an hour.

Society and medical culture gloss over the money issue, but it's a big deal. The low wages paid to personal support workers tells you that society views this crucial function as shit job. That family members are paid zero by the state tells you that society places no value on their hard work.

A few years ago, a report by the Canadian Institute for Health Information or CIHI estimated that more than two million Canadians were what they called 'informal caregivers.'  I fell off my chair when the report added that a conservative estimate of their economic contribution was 25 billion dollars a year.

There's one more factor that you may be surprised about.  I know all about it because I've been a doctor for decades. It's a hidden form of stress we don't talk about. It's the stress that comes from feeling like we have to know the right answer to every question and to never make a mistake.

That stress comes from feelings of shame. I have come to believe that there's an epidemic of toxic shame within the medical profession.  

Brené Brown, a researcher and a professor of social work, describes "toxic shame" as a paralyzing feeling of being unworthy. I suspect that many people become doctors to do enough good deeds that will indemnify them from inevitable medical mistakes.  

Unresolved shame grips doctors in a quiet terror. It leads them to avoid contact with critics, including caregivers.- Dr. Brian Goldman

Unresolved shame, time pressure, burnout and stress interfere with the doctor's capacity to empathize with patients and their caregivers, to imagine what it's like to be them.

But there is a sure fire way to gain that perspective. It's called life.

My mother Shirley was diagnosed with Alzheimer's disease around the time she turned 70.  My parents were married for 62 years. I saw how tenderly my dad cared for her from the moment she was diagnosed. He moved from being my mother's social convenor and business manager, to her occupational therapist, and finally, her personal care aid.

My dad was one of the two million Canadians caring for a loved one at home. He spent long hours helping her function at a much higher level than her dementia should have allowed.

I remember too that he had his first heart attack exactly five months after he finally admitted he could no longer care for my mother at home.

I gained empathy for my dad because I saw things from his perspective.

As their health declined, my parents were admitted to hospital a combined total of 14 times.  

I gained empathy for my parents as patients because I spent hours watching them up close, and tried to do something – anything – to ease their suffering.

Those experiences gave me something else: empathy for others going through the same kinds of crises.

It's been said that the best way for physicians to gain empathy for patients is to be patients themselves, or to be the family member of someone going through a serious health crisis.

What I know now is that empathy is not a soft skill. It's a core part of the human experience. Without it, we would not nurture our young and take care of our parents when they can no longer take care of us. But stress, pressure, sleep deprivation, fatigue and shame get in the way.

To empathize with caregivers, we must first take care of ourselves. When shame arises, we must strip it of its power by talking aloud about the mistakes we make.

We must ask those we harm for forgiveness and learn to forgive ourselves.

To be kind to caregivers, we must first be kind to ourselves.