Talking About Health; Why Health Communication Matters

Do we want doctors to tell us if we have advanced cancer?

117_1755 February 18, 2010

In 2002, Hisako Kakai published an article in the journal, Health Communication, about preferences for disclosure of a cancer diagnosis. Dr. Kakai indicates that in Japan, a direct communication style is usually preferred when it comes to disclosing one’s personal diagnosis of cancer. In other words, people want to be told they have cancer. However, an indirect communication style with no disclosure, or an ambiguous disclosure to the patient was preferred for a family member. The article raises many interesting communication and ethical issues.

A serious diagnosis raises the question, ‘how do we deal with uncertainty?’ Communication plays a big role. It points to the reality that we often are not good with dealing with uncertainty. We frame uncertainty as ‘bad’ and let uncertainty overtake everything good that might be going on in our lives. This relates to how we communicate about a serious health condition. It also relates to how we communicate about the economy, about security, and about an endless number of issues that equal being — human.

The message communicated often to us is, ‘work hard and it will pay off’ — with payoff crossing a spectrum from health, relationships, and wealth. The message, ‘life is uncertain. Work hard at your relationships and school and work, and take satisfaction in the fact that you worked hard’ — is communicated less often, if at all. And it shows up in our inability to deal with uncertainty, our obsession with …reducing the uncertainty.

Should the goal in communicating be to reduce uncertainty? When it comes to our health, that may not always be the best aim. If we can learn to manage the uncertainty of a diagnosis, we may be better able to live our lifes as someone living with cancer or heart disease or diabetes. If we make the diagnosis a more integral part of our being and identity, we may communicate in ways that define us to others as being disabled rather than living with a disability, diabetic rather than managing life while living with diabetes, and so on.

Even more surprising, when we focus on managing our uncertainty as a part of life, we may even discover that there are times when we communicate to increase uncertainty. Instead of being certain that our future, our health, our well-being are uncertain and that is a bad thing, we can use uncertainty as a way to promote hope. In our own research, Ben Cairns and I found that this was particularly important for people who have newly experienced spinal cord injuries and their family members. ‘Will she walk again? Will he be able to do things for himself? Can she sit up on her own? Can he feed himself?’ Not knowing offers people living with the injury and their families and friends the hope that they might do these things again.

Communicating to increase uncertainty about a diagnosis thus gives some time to adapt to a diagnosis. And that may be the best and more ethical way to communicate about an advanced cancer diagnosis as well. Not telling so that a patient does not know a true diagnosis may seem to offer a way to manage a serious diagnosis and thus to reduce uncertainty. Telling and acknowledging that the diagnosis is serious, even very serious, but that predicting exactly when the end-of-life will happen is uncertain may give some time to adapt to the diagnosis and some hope that important things that have not been said can be…

…a lesson in Dr. Maureen Keeley’s award-winning book, Final Conversations that has been shown to be so important for those who know that they are dying and the loved ones they will leave behind.

Why don’t our doctors recommend ‘it’?

117_1749 February 8, 2010

The fourth chapter of my book, ‘Talking about health…why communication matters,’ provides some answers to the question, ‘Why don’t we get care?’ The discussion goes beyond the vital limitation–we don’t have access–to consider what happens when we do have access and we still don’t get health care.

The first topic discussed in response to the question, ‘why don’t we get care’ is: our doctors don’t recommend it. There exist several answers to the question, ‘Why don’t our doctors recommend it?’

One reason our doctors don’t recommend a treatment that we might expect reflects the reality that no treatment yet exists. The media story bringing to our attention a scientific discovery published in a leading journal such as the Journal of the American Medical Association or Lancet or the New England Journal of Medicine may set our expectation that the discovery translates to new treatment. It is a long journey between scientific discovery and health care.

The National Institutes of Health–which includes the National Cancer Institute, the National Eye Institute, the National Heart, Lung, & Blood Institute, and others [see http://www.nih.gov/icd/index.html ] emphasizes the importance of translating discoveries to benefits for the people. But the process follows a series of steps. So, in short, our doctor cannot recommend what is not yet available. Still, it never hurts to ask in case there might be some clinical trials going on in efforts to develop treatment based on the new science. And, it can’t hurt to do a bit of sleuthing of our own on the internet to see whether the media story relates to the possibility for new treatment.

Other reasons that doctors may not recommend a treatment have to do with such realities as: time slips away during an appointment and it just didn’t get brought up. Or, the doctor planned to talk with you about a treatment but–forgot. Perhaps your doctor even said in your last appointment that she would talk with you about some other options for care at the next appointment, but then doesn’t. In all of these cases, if it is important to you, bring it up. These are ways that communication can indeed matter when talking about health.

What should I do if my doctor interrupts me when I am trying to explain why I am there?

January 14, 2010

Ahhh. A friend asked me this question recently. I’ve heard it from family members, too. And it has happened to me.

So, first, don’t take it personally. It feels hard not to because we use communication to regulate conversation, and we have learned cues that signal it is our turn, like the other person stops talking. When we haven’t stopped talking and someone interrupts us, it feels rude. We feel devalued. What? You don’t want to hear what I have to say??

Second, realize that time constrains a doctor. It is frustrating for us to wait in the waiting room. Then we wait in the exam room. Finally, the doctor appears. Then we seem to get about 10 minutes if we are lucky. Truth is that a doctor works for an organization. Even if it is the doctor’s organization or practice with a couple of others, it is an organization that has employees and must manage its resources–the doctor’s time in this case. A certain number of patients need to be seen to satisfy the organization. So the doctor really does not have the luxury to spend more time with you…unless an emergency necessitates it.

Third, ask yourself, are you telling a story as a way to tell the doctor why you are there? A story about how we were gardening all weekend and then we noticed a thorn seemed to be lodged in our finger and then we tried to get it out but it now seems to be infected even after we washed it really well and kept it covered in antibiotic ointment for the past several days… Or a story about how we have been doing a lot of traveling for our job and it all began with the downturn in the economy and so in the past month we have spent more days on the road than at home and suddenly, we’ve noticed a sharp pain at the back of our knee. Or the one about how between our job and our family–with a lot of details built in–there is just no time to exercise.

Fourth, if you are telling a story, stop. The reason you are there is: an infected finger, pain in the back of your leg, an annual check-up and help to lose weight. See how much more concise that is? Then if the doctor has questions, elaborate. But again, come to the point.

Fifth, be direct about what you want as well. If you haven’t read Deborah Tannen’s book, You Just Don’t Understand: Women and Men in Conversation, it’s worth reading. Some of the lessons to be learned apply to talking with our doctors. There is an example about saying, “the trash is full” in hopes that a spouse will know to empty it and feeling frustrated when the trash doesn’t get emptied. “Please empty the trash” is the more direct approach and more likely to lead to success. A story about how your friend has acne and her blemishes are not as bad as yours and her doctor prescribed such and such…still may not generate the doctor’s answer to your question, “Why aren’t you prescribing such and such?” In the age of internet searches for medical information, perhaps there is a list of things you think the doctor might do and none of them happens. So, ask about it in a straightforward way. No, you don’t need to tell about how you were googling the news and came upon a story about someone’s condition that sounded just like yours so you started paying more attention to your symptoms and it seemed like you should come and get checked out. Just say, “I have these symptoms and I wondered if such and such might help.” Doctors know we are using the internet to get medical information. It is no surprise to them. Sometimes, they are really happy about it. Other times, not so much.

It’s a start. See if it works.

Why should you talk about family history and health?

roxannebuggy January 12, 2010

The woman on the horse is a relative that I share a first name with…tho, of course, I never knew her. I wonder what else we might share. Hair color, height, health?

The U.S. Surgeon General advises us to ‘know our family health history.’ The problem is, what to know and how to know it. Since 2004, the Surgeon General has declared Thanksgiving to be National Family History Day [http://www.hhs.gov/familyhistory/] as part of an initiative to get us talking. While we do need to find a time to talk with our family about our health histories, few things seem more doomed to failure than pushing families to talk about poor health at a gathering aimed at celebrating.

First, older adults in our families have many interesting things to tell us about that go on in their lives besides poor health. Many have good health and no reason to focus on poor health. Many want to avoid the stereotype linked to old folks talking about their health and nothing else…even when they do have poor health.

Second, younger adults who need to know about their family health history need to know details that are unlikely to be discussed in such public settings, or if they are discussed, unlikely to be remembered.

Third, it is not particularly helpful to know that there is diabetes or heart disease or cancer in your family if you don’t also know who had the condition, at what age they had the condition, what treatment they used to address the condition, and with what success. Or, knowing what family members have died from should be accompanied by information about the age at time of death.

In this era when we have more awareness of how genes affect health and our reponses to medications and other therapies, we may want to know whether our family members have had any genetic tests. If they have, what ones led to positive results indicating the presence of a particular form of a gene?

Talking about family health history is important but can be difficult if we don’t make time and don’t know what to talk about….

What about public health care reform?

117_1784 January 10, 2010

I never hear anyone talk about public health when they talk about ‘health care reform.’ This bothers me because we have a univeral system of public health in the U.S. and we spend quite a lot of resources on it. The services linked to our public health care system range from checking the quality of restaurants and ‘grading’ them to providing newborn screenings. We spend quite a lot of time deciding what services to provide in each state. Besides registering births and deaths, and newborn screenings, many states have prenatal care programs, other women’s health programs, and a wide range of programs from smoking cessation to drug prevention to cancer screenings.

We don’t talk much about public health. But what might a connected system of health care built on the system of clinics and services for public health look like? How would doctors and health care staff feel about building on their infrastructure? Some states have regional health care directors? How would they regard an effort to connect the services they oversee to a broader range of services for the public to consider as a choice for care?

Anyone?