The importance of compassionate communication at end-of-life

There’s nothing like a networking event to get you reenergized about the work you do. Last night I attended a Marquette alumni networking event and I got into a conversation with an alumna who is a hospice nurse and also has a background in communication. In the course of our conversation, she asked me about some of the trends in communication research in health care. After telling her a little bit about the study I am working on at the Medical College of Wisconsin, I said that there is a tremendous amount of compelling research on situations she would be familiar with: communication about breaking bad news and communication about the end-of-life.

Sure enough, Dr. Pauline Chen’s column this week was about communication at the end-of-life and the difficulties it raises. These are difficult but very important conversations. These conversations are especially difficult because they are layered with family members who may not be ready to accept such a diagnosis, the uncertainty the physician has at the length of time a patient may have left, and religious and cultural beliefs about death. Physicians also worry about taking away hope from their patients. But studies have found that patients who are made aware of their condition have a better quality of life in their final days.

I was also excited to tell my fellow alumna about my own research on nurse-patient communication regarding end-of-life care, and was especially pleased to be able to tell her that after three years of revising and editing, my article was accepted for publication in Patient Education and Counseling.

These are important conversation for physicians, nurses, patients and families to have. And as Dr. Chen points out, they should not be one-time conversation, but should be ongoing.

The history of discrimination in medicine

The New York Times had a compelling article today from Dr. Barron H. Lerner about the little known history of Jewish physicians facing quotas and discrimination in hospitals in the U.S. in the early 20th century. The practices weren't explicit, so they were hard to track and document, but many medical schools and hospitals discriminated against Eastern European Jewish physicians and medical students. Lewis P. Rowland discusses the history of discrimination in "The Legacy of Tracy J. Putnam and H. Houston Merritt." The book documents one physician's strategy for working around the quotas to hire many top physicians who were fleeing from Europe in the years leading up to World War II. Dr. Putman was later fired from his job as the head of Columbia's Neurological Institute, because he refused to fire all "non-Aryan physicians."

Dr. Lerner notes at the end of the article that the quota policies largely disappeared after the end of World War II, but that the contribution of Dr. Putnam should not be forgotten.

hospitals and social media

The New York Times had an article yesterday about the growing trend of hospitals using various types of social media to reach potential patients. In the past, hospitals have been quite conservative about marketing and advertising, but now you can find hospitals posting videos of surgeries on youtube, surgeons twittering during surgery, and patients blogging about their care at a hospital.

Hospitals see social media outlets as a cheap way to reach out to potential patients, who are increasingly doing more research and comparing hospitals for treatment, rather than simply going where the doctors sends them. But ethicists quoted in the NYT article raise some important questions, not just about patient privacy concerns, but also about the responsibilities hospitals have regarding how they represent themselves. Do these videos and other outreaches paint too rosy a picture of medical care at a given facility? Do hospitals have an obligation to disclose on the video what can go wrong during a procedure? There are also serious questions about using social networking sites to recruit volunteers for clinical trials. After reading the article, I would add questions about whether patients might be coerced into allowing a physician to broadcast a procedure or to give a positive review for a web video.

The article raises important questions. What do you think? What ethical questions should hospital consider when thinking about social marketing strategies?

occupational risk

Dr. Pauline Chen wrote an article today about the occupational risk facing physicians. Physicians have the honor and obligation to treat patients, but with that, run risk for infection and disease. But the actual risk is largely an estimate, since there is no registry to document the number of occupational deaths of health workers, unlike similar registries for fire fighters and police officers.

How do you think this information would shape perceptions of health workers? You can see some comments on the article here.

Not just disclosing payments, but making them public

The New York Times reported today that the Vermont legislature has passed a bill that requires pharmaceutical companies to make public how much money is paid to doctors and to whom. This legislation goes beyond other state measures restricting what pharmaceutical companies can pay to physicians to require complete disclose of all payments made to individual physicians. The law also bans nearly all gifts, including free meals, to physicians, nurses and health systems. The idea is that making the information public will give patients information about a physician's potential financial interests.

What do you think of this kind of information? Is it useful to patients?

Fighting for unapproved drugs

The New York Times had a compelling article yesterday about one family's fight to access a new drug to treat ALS that has not been approved by the FDA. The story is gut-wrenching. It's hard not to feel for the patients, who are fighting for any shred of hope of treatment. But at the same time, it's hard not to see the side of the FDA, who doesn't want to release harmful drugs or promote false hope.

There is no easy or final answer to this dilemma. It will likely continue as long as there are new drugs in development and patients and their families are looking for any hope for treatment.

The potential trouble with novels and eating disorders

The New York Times Well blog had an intriguing post about the influence novels may play in giving young people ideas about anorexia. Girls with anorexia, or teetering on the edge of anorexia, may look at books that portray the horrifying consequences of anorexia as inspirational rather than precautionary. The literary detail may even function as a how-to guide.

No one thinks that someone would pick up a book like the reviewed Wintergirls and decide that anorexia is glamorous and decide to try it. There are likely a host of other psychological issues at play in those with eating disorders. But if someone with those psychological issues picks up that same book, could it be a trigger? Can these stories be told any other way?

You can find the review of the new book Wintergirls here and a discussion on Well here.

A patient tells her story

Connie Culp, the first U.S. face transplant patient, is now telling her story. Though her story is not yet complete, in coming forward, she is hoping to help foster acceptance of others who have suffered from burns and other disfigurements.

How we see ourselves and see others

The New York Times had an interesting article earlier this week about how we perceive ourselves and how we perceive others regarding moral decisions. People tend to over-estimate their own moral goodness and use the over-estimation when judging the behaviors, or moral shortcomings, of others. The author explores how this over-confidence can benefit in some circumstances and hurt in others.