Medical care is not only of great importance to individual patients. The impact of medical decisions can also have a devastating effect on a patient’s family and relations. Having said this, care providers have very little opportunity to involve the family in the care given to a patient, claims Marian Verkerk, Professor of Ethics of Care at University Medical Center Groningen. ‘Legislation and guidelines relating to healthcare revolve around the individual, despite the fact that patients make many of their decisions in consultation with the family. This area needs more attention. It’s time for family ethics in healthcare.’
It is the job of carers to inform patients about their condition as fully as possible, thereby enabling them to make autonomous decisions about the care they require. Verkerk agrees that this individual freedom of choice is a good thing. But the focus on the individual also exposes shortcomings in medical ethics. Verkerk: ‘Imagine blood tests show that I have a congenital condition that greatly increases my risk of developing cancer. This diagnosis can have serious implications for the rest of my family. They might even run the same risk. But should they be told? They may not want to know that they are at risk. Care providers are unsure about how to deal with situations like this and medical ethics does not provide any answers. Something needs to change.’
It isn’t that these questions don’t interest doctors and medical ethicists, Verkerk hastens to add. After all, the ethics of care has been a hot item ever since medical care was first administered. Since the days of the Greek physician Hippocrates, around 400 BC, doctors have been required to swear an oath at the start of their medical career, in which they promise to perform their duties in an ethical manner. The most elementary principles are centuries old, but medical ethics only really started to evolve as a separate item in the 1970s. So many care guidelines were devised in an era that bowed to the rights of the individual.
Questions needing more family-based medical ethics arise throughout the care sector, from home care and genetics to questions concerning the beginning and ending of life. If an unborn child is diagnosed with Down’s syndrome during routine prenatal screening, care providers dutifully supply information about the consequences of this abnormality to the parents and the child. Verkerk: ‘In cases like this, counsellors do invaluable work, talking to the parents. This is what they are trained to do. But medical ethics has paid little attention to the fact that their advice also contains hidden opinions about what constitutes a good family, and how people view parenthood. This is because it is based on the individual and not on a family or a network of relations.’
In some ways, care providers are ahead of the ethicists, according to Verkerk. ‘Family doctors in particular are used to forging a relationship with the people close to their patients as well as the patients themselves. This does not usually cause problems, but in some cases it can lead to tricky situations. Take, for example, a grandfather who withdraws from the family towards the end of his life and decides to refuse further treatment, while the family is urging the doctor to intervene. The doctor is obliged to respect the wishes of the patient, as medical legislation states that the rights of the individual are paramount. This is another area where medical ethics could play a larger part.’
In the meantime, carers and ethicists must not close their eyes to the negative effects sometimes emanating from families. Verkerk: ‘If a woman has been subjected to years of domestic violence and decides to have an abortion at her husband’s insistence, is that really a choice? What role does the relationship play here? And how should care providers respond? There are no straightforward answers to questions like this. But we medical ethicists should be giving care providers more instruments to help them think carefully about such issues.’
Marian Verkerk studied philosophy in Utrecht and was awarded a PhD in 1985 with a thesis entitled: ‘Ethiek en Welzijnbeleid’ [Ethics and Welfare Policy]. She has been Professor of the Ethics of Care at the University Medical Center Groningen (UMCG) since 2001. Verkerk is also a member of the Health Council of the Netherlands. She is currently heading international research into family ethics in the care sector. More information about the research project is available on http://www.family-ethics.com
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