Treatments for the few

Submitted on Mon, 02/01/2016 - 10:50

bioetiikka

Medicine may soon be producing efficient treatments that could be too expensive for the poorest patients. Heikki Saxén, a researcher of bioethics at the University of Tampere, says that major medical breakthroughs are underway, a fact that has largely gone unnoticed by the general public.

“The big fear is that only the elite will benefit from the new treatments. This is a huge challenge to the welfare state,” Saxén says. 

Heikki Saxén
Heikki Saxén’s time at Harvard University changed his life. He is now calling for a pluralistic public debate on bioethics in Finland. Photograph: Jonne Renvall

The history of ideas and John Rawls’s theory of justice led Saxén to bioethics and Harvard University. He is currently working on his doctoral dissertation and chairing the Board of the Finnish Institute of Bioethics, which was established in 2015.

The problem is not with the medical breakthroughs per se – Saxén is certainly not opposed to scientific progress. However, he wants to include the public in the debate over the new treatment methods.

Million-euro treatments for special groups?

The Council for Choices in Health Care in Finland at the Ministry of Social Affairs and Health works on the policy definitions of what treatments should be included in public health care in Finland.“They are afraid of the day when a new therapy becomes available that is highly efficient for a small group of patients but comes with a price tag of half a million per treatment. Health care professionals must make very tough decisions regarding who can get such treatments despite the exorbitant costs,” Saxén says.

Personalised medicine is revolutionising treatment practices. For example, it becomes clearer by the day that all prostate cancers are not alike, and doctors can now treat patients in a personalised way based on their unique genetic makeup. However, matching such new aspects with everyday health care can be difficult.

“We must make policy decisions in this grey area: the aim is to treat all patients in a personalised way, but the whole arsenal of treatments cannot be made available to all patients at the same time. Health care professionals must make such compromises so as to examine the patients a little bit here and treat them in a personalised way a little bit there,” says Saxén, describing the dilemma health professionals are facing.

He predicts that the new technologies will be “half” introduced in Finland so that all patients can benefit a little, but none will get the full treatments.

“It is quite harsh when a patient is suffering from an acute condition and everyone knows that there is still more that could be done for him or her. It is taxing for the doctors to tell the patient that they have to make such compromises in the name of equality,” Saxén explains.

Clinical ethicists support patients and staff

At the beginning of 2016, Saxén began a new two-year study investigating the needs of prostate cancer patients in the Pirkanmaa Hospital District. His aim is to conduct about thirty interviews with patients, researchers, health care professionals, members of ethics review committees and other concerned parties.

Saxén describes his research as a basic charting; it focuses on the patients’ experiences and the ability of the hospital district to handle different treatment situations. Ethical questions will be highlighted, especially in regard to issues of privacy.

In the United States, clinical ethicists are a fairly new occupational group in health care. Their job is to facilitate and help solve the conflicts and differences of opinion related to treatment, and to disseminate information to health care and research organisations. Personalised treatment may also require similar solutions in Finland.

“Patients cannot be put into hospitals as if into machines where they all go through the same wringer. Someone other than the patient must also have an overview of the personalised treatment situations. Our research will produce information on whether Finns would benefit from the experiences gained in the United States,” Saxén says.

At present, hospital treatment is supported by legal professionals, hospital chaplains, social workers and ethics committees, but there may still be issues in the grey area that are not covered by any of these professionals.

“I am not suggesting that anyone should bring their own philosophy books to the bedside, but rather people should have open channels for discussion. Clinical ethicists employed by hospitals could be helpful in many ways.”

The erosion of patient trust

Bioethics is very much in demand now that treatments are becoming more expensive, the political climate is becoming more radical, patients’ demands are increasing and medical expertise alone is no longer the answer to all questions.

“We should have a multi-voiced, pluralistic debate, but it is uncertain what kind of a debate we will get. Is our democracy strong enough to ensure that health care institutions can adapt in a flexible manner?” Saxén asks.

Unlike people in many other countries, Finns generally still trust their health care system. However, Saxén suspects that the tide might turn and the trust could be replaced by suspicion.

In the United States, where people have less trust in health clinics and hospitals, much work is required from lawyers.

“Such developments could be really detrimental to a country like Finland,” Saxén says.

A demand for interaction

The debates around vaccinations and low-carb diets show that trust in medical authority is not watertight in Finland, either.

“Perhaps I am an idealist, but I believe people are ready to conduct this debate in a constructive manner if the proper channels are opened for them,” Saxén says.

He has noticed that some health care professionals have become jaded, which is shown by their reluctance to engage in public debate, for example. They are afraid of unpleasant questions, even though a more unpleasant outcome may ensue if public information sessions are never organised.

“It’s not true that Finns are no longer able to conduct a reasonable discussion. If people believe that we cannot engage in such a debate, it becomes a self-fulfilling prophecy,” Saxén points out.

Harvard changed Saxén’s life

In 2012, Saxén, who had a Master of Arts degree in history and had begun working on his dissertation on the history of bioethics, went to the East Coast of the United States to learn about bioethics research at the Hastings Center.

“I visited the Hastings Center for two weeks and also went to Yale and Harvard. That month energised me: something magical happened. People over there are encouraging and inspired. It may sound like a cliché, but they have the firm belief that people can do whatever they want.”

Saxén returned to Tampere a changed man. He started preparations to set up the Finnish Institute of Bioethics. Following this, he has been working at a hectic pace. Saxén spent the 2014–2015 academic year at Harvard as a Fulbright scholar and established the Finnish Institute of Bioethics at the end of 2015.

Questions of bioethics are soon bound to become everyday topics of conversation in Finland, too.

Text: Heikki Laurinolli