Complicated Systems and the Cancer Patient

What are your experiences with hospitals?

Sometimes it feels as though our health care system makes it even more complicated and difficult to be ill. Cancer care is a good example of the barriers and frustrations that too often interfere with our receiving the very best care. An obvious example is insurance and costs and high co-pays and deductibles that are onerous, if not devastating, for many families. Did you know that medical expenses are the number one reason for bankruptcies in America?

But let us move on from the topic of financial toxicity that could otherwise dominate this essay. What else makes it hard to be a cancer patient? Commonly listed barriers to care include things like transportation, literacy, language, education, logistics and schedules. If you don’t speak English and have a job that only pays your salary when you show up for work (sorry, back to money), it is really difficult to make an appointment to see a doctor. How many people just continue on, hoping that the physical problem will go away, and then show up at an ER when things are really dire?

Let us think about what happens when you do make that first phone call or show up for an initial appointment. Starting with the telephone systems, it feels as though someone is trying to make it as hard as possible to reach the right person. You know the drill: “pick 1 for X, 2 for Y”. It is almost always a machine. When I answer my own phone, callers are usually stunned and take a moment to realize they are speaking with a person and not an answering machine. After leaving a message, it can be a very long time before you receive a return call. All too often, there is never a return call, and you have to keep dialing.

Even people who are well educated and informed are overwhelmed by the complexity of our hospitals. No matter who you are what you have accomplished in life, it is very scary to get off the elevator on the Oncology Floor. Entering Cancer World feels other worldly; it has its own language and customs and population. The initials after peoples’ names look like alphabet soup. Who are all these people and what do they do and how do they participate in my care?

People who are admitted to the hospital find it even harder. As we all know, only people who are really ill are inpatients these days, so the first assumption is that you are feeling poorly. No one sleeps well in the hospital due to many interruptions and often a roommate and the discomfort of an unfamiliar bed. Add exhaustion to the picture. Then consider the constant parade of visitors. You are asked the same questions over and over and over. Sometimes the visitor wants to stick you with a needle; more often, they want to poke and prod. The food is usually less than wonderful in spite of all hospitals’ real efforts to improve the menu and delivery. (Note: It is always helpful to have your family or friends bring in food if they visit at mealtime.) In a busy hospital environment, all sense of time is lost. Elderly people often “sundown” which means that they become confused and disoriented. I think that younger people experience a milder version, and it worsens if the stay is long or includes time in an Intensive Care Unit.

It used to be that our regular doctors, our Primary Care Physicians or family doctors, visited us in the hospital. This is increasingly rare, and there is a whole specialty called hospitalists who are physicians who work only in the hospital and manage care. They are usually excellent doctors, but we don’t know them and aren’t comforted by a long and caring relationship. It is very confusing as to who does what, and who is responsible for what, and patients spend a lot of time waiting for answers.

Of course, technology and giant advances in science and medicine have meant that many diseases and situations are cured that used to be lethal. We are grateful for the sophisticated, quality care that we receive, but it is the human connection of long-standing that is usually missing. I am thinking about this because I read about a new partnership between The Commonwealth Fund and the Harvard T.S. Chang School of Public Health that is committed to trying to weave the power of data and technology and medicine with the human needs and stories of patients. This is a vitally important project, and we all wish them well. 

In the meantime, what can you do to try to make the experience of being a patient a little easier? The most helpful suggestion is to speak up.  Start with asking everyone who comes into your room who they are and why they are there. They should introduce themselves without the prodding, but they may not. Ask your regular/ongoing doctors how best to communicate with them? Do they prefer phone calls or emails or the use of their hospital’s Patient Site? If you don’t understand something, ask again. If you are hospitalized, bring in a few pictures from home; seeing the images of you in your real life will remind everyone of the bigger perspective. In your discussions with caregivers, find ways to briefly mention life facts, tell them who you are. We are all people who are trying to work together for the same goals, but sometimes we need help getting there.