Kaiser Survey on End-of-Life Care

Like many other aspects of our health system, end-of-life care comes in for heavy criticism, usually for being too intrusive, technological and expensive.  A survey from the Kaiser Family Foundation compares perceptions of end-of-life care in the United States, Japan, Italy and Brazil.   (Kaiser Survey)   Japan and Italy have a particularly large proportion of their population over age 65, the US is in the middle and Brazil has a relatively young population.  But all countries eventually will cope with the health needs of a large elderly population.  The cost of an aging population is viewed as a major problem by 91% of people in Japan, 57% in Italy, 38% in Brazil and 36% in the US.   A majority of people in all these countries say the government is not prepared for the problem.  In the US a majority of people think families are ready, while a majority in the countries say they aren’t.  A majority of people in all the countries think their health system is fair or poor, but the US has the best rating, with 16% saying it is excellent.  The US also has the fewest number of people saying the health system is fair or poor in dealing with end-of-life care.  Brazil is the worst by far with 90% saying their system is fair or poor overall and 86% saying it is fair or poor in handling end-of-life care.

How many people think this is a government responsibility?  82% in Brazil, 78% in Italy, 55% in Japan and 42% in the US.  Conversely, in the US 44% agree that it is a family and individual responsibility.  Large majorities in all countries think children should help with end-of-life issues, but interestingly, the older people themselves are less likely to say that, apparently not wanting to burden their children.  Only in Brazil do a majority of people think it is more important to prevent death and extend life compared to reducing pain and distress.  82% of people in Japan think the latter is more important, as do 71% in the US and 68% in Italy.  In the US top concerns around dying are making sure the family is not financially burdened, making sure wishes for care are followed, and having loved ones around.  In every country a majority of citizens say they want to die at home, but there is a gap with what they expect to happen; many are fearful that they actually will die in a hospital.  88% of Japanese and 87% of Americans say the patient and families should have the largest say in end-of-life care, compared to physicians, whereas only 52% of Italians and 47% of Brazilians express this view.  A majority of respondents in all countries say death is a topic people avoid, but Americans are most likely to report having a conversation with family about end-of-life wishes.  A large number of people have had an experience of helping with end-of-life care for someone else and this group is more likely to talk about or write down their own wishes.

This survey reflects that at least in this regard the US system is performing relatively well.