Do you have the time to listen to me whine? Sorry, but I need to vent about the challenges of being terminally ill in America today. I am not sure that it is worse than in other countries. In fact, I am sure it is dramatically better than in most developing nations.

I am not a medical expert, only a patient who has also been a small busi­ness owner most of his life. As such, I am required to put my customer’s interests first or I will surely fail. It boils down to customer service – saying what I mean and doing what I say. If I don’t do what I say, my customers will soon lose faith in me and find somebody else who can be trusted.

I have made my living earning my clients’ trust and doing everything in my power to keep it. They know that when they give me a project to complete (I am a facilities project manager – I build offices), they can count on me to get it done with their best interest in mind.

Why can’t our medical providers do this?

Don’t get me wrong, not all of my experiences have been bad. In fact, my current local oncologist and his staff are as good as it gets at providing quality health care in a friendly manner that takes my personal needs into account. My appointments with them are generally on time, the reception staff greet me with a smile EVERY time I arrive, my doctor patiently listens to my concerns, and the facilities are kept clean and reason­ably cheerful.

I have had too many negative experiences to count with other providers, but my local oncology team is def­i­nite­ly top notch.

But let me start at the beginning.

My myeloma was initially detected by a blood test ordered by an immunologist; she was the one who re­ferred me to my first oncologist. This is not unusual. Most of us met our first oncologist through a referral from another doctor. We don’t choose them. It is entirely dependent upon the doctor who refers us.

As they say, you never get a second chance to make a first impression. That first oncologist blew it big time! His offices were crowded, old, and full of many very sick people.

I was terrified!!

Worse, the staff were unfriendly, uncaring, and obviously overwhelmed. Every appointment I had with this guy started with a minimum one hour wait past my appointment time.

The oncologist came highly recommended and seemed to have a good grasp of myeloma, but I really didn’t like him. He was very impersonal and didn’t seem to care about me as a patient – only my disease.

I was so confused! I was in shock over my diagnosis and the fact that I was facing a terminal disease. I didn’t like doctors in the first place and had avoided them as much as possible in the past. All of a sudden, I was faced with a guy to whom I was supposed to entrust my life, who obviously had the necessary medical skills to treat me, but who had the personality of a small plastic soap dish!

As is often the case nowadays, this oncologist was part of a consortium of doctors who had partnered to create a cancer treatment center. Unfortunately, the doctors at this center represent about 75 percent of the oncologists in the city of Honolulu. When I inquired with my primary care doctor and others around town about alternatives, I was told this doctor was excellent at his job and finding a different doctor would be difficult, since most of them work for the same center.

What should I do? Is it okay to quit the guy who is trying to save your life? That doesn’t make sense, does it?

Actually, it does.

Your myeloma is quite possibly the most personal problem you will ever face. When dealing with life or death, we willingly make ourselves as vulnerable as we ever will in order to give our physician the best chance at keeping us alive. Even a colonoscopy isn’t more invasive.

Not only are all of our internal organs available for inspection, but also our emotions and our feelings. All parts of our beings are a part of our treatment.

If you aren’t comfortable with the person you are asking to help you with this most personal fight, you may not be successful in its outcome.

For me, my oncologist must be a better fit personally than any other doctor. I am willing to give up technical prowess if necessary in order to achieve this personal connection. I need a doctor who understands my disease, but who also is willing to understand me. This combination is what will lead to my best treatment outcome.

This isn’t always true for other health problems. If I need open heart surgery, I would like to have a great surgeon – even if he’s kind of a jerk. Once he’s done cutting, he has pretty much achieved all he needed to achieve. The rest is up to me.

With myeloma, we are treating a disease that will most likely be with us for the rest of our lives. Our on­col­o­gists don’t just cut and run. They are with us the whole way. We shouldn’t settle for someone who doesn’t fit this role.

Furthermore, we shouldn’t settle for a poorly run medical office, center, or hospital. Let’s hold our health care providers to a higher standard of care. If something isn’t being done properly, respectfully point it out to the person in charge. If you don’t speak up, don’t expect things to change.

Here are the things I think we have a right to expect from our health care providers:

1. Run on time. Obviously, an unexpected emergency may come up, but generally we should have our time respected as much as we respect the time of our physicians. I don’t think anybody should be concerned about a few minutes wait, but being an hour behind every day is a problem that needs to be addressed.
2. Ensure your staff are polite. This should be so simple. Try to smile. Greet us when we arrive instead of pointing us to a list to sign. I understand that there may be rare situations where being polite can’t be a priority, but generally this should be the rule. If somebody finds this overly complicated, perhaps they should find a job where they don’t have to talk with people.
3. Spruce up your facility a bit. By design, health care providers are dealing with sick people. Having a dreary, worn out facility sets the tone before we even see the doctor. This affects healing. A good cleaning and a coat of nicely colored paint doesn’t cost very much.
4. Communicate electronically. We live in an era of amazing communications. Our medical history and test results should all be available online, and we should be able to ask our doctor a question via email. Our doctors are busy – we get that. So why shouldn’t we be able to send an email that they can answer when it is convenient for them? I am amazed when one office has to fax a barely readable printed copy of some test result to another office. This should all be done electronically.

In our professional lives, we would never be allowed to offer the substandard service that many patients are forced to endure from our health care providers. If this is your experience, maybe it’s time to find somebody better.

For me, I bit the bullet and searched for another oncologist who fits me well. I found a doctor who listens to and cares about me, who is very in tune with current myeloma treatment options, and who is a part of a well-run oncology center.

It was very satisfying for me to tell my original oncologist that I wouldn’t be back. Hopefully he will get the message and do what he can to improve the care he offers. Most likely he didn’t even notice that I did not come back.

Maybe you should consider firing your doctor, too.

Aloha and carpe diem!