by Craig Klugman, Ph.D.
In its April 29th issue, The Economist published an article on people’s “hopes and worries for their end-of-life wishes.” The study compares responses to a set of questions from subjects in the Brazil, Italy, Japan, and the US. The data was part of a larger study conducted by the journal and the Kaiser Family Foundation on perceptions of health held by people in the four countries. The results supports other studies conducted in recent years in the U.S. and also gives insight into how we compare to the rest of the world.
The study is extensive, drawing comparisons about conversations with a health care provider, experiencing the death of a loved one, being aware of a dying loved one’s end of life wishes, loved one’s experience with pain and access to treatment, as well as awareness and use of hospice (US awareness at 36% is 3 times higher than any other nation). I recommend that you look at the study data and analyze it yourself. Below, I discuss several of the results that I found particularly interesting and postulate on their possible cause.
Goals of End-of-Life Care
Consider that of the four nations, the Japanese are the most concerned about “helping people die without pain, discomfort, and stress” with 82% of people selecting that choice, while in the US, only 71% share that concern. However, 50% of Brazilians feel that what is most important at the end of life is “preventing death and extending life as long as possible.” These results make sense in cultural and historical context, as Brazil is a highly Catholic country, whereas Japan has a long history of dignity and choice at the end of life. However, Italy, which is also a Catholic country, only has 13% of people focusing on prolonging life. The difference may be related to Brazil (87%) having a higher rate of religiosity (participation in religious life and belief that religion is important in one’s life) than Italy (72%). Also consider that religiosity is connected to socioeconomics and while Italy and Brazil may have very similar GDPs there is a wide discrepancy in per capita income between Brazil ($15,200) and Italy ($36,300). In the US, 19% of people believe that life should be prolonged at the end.
Priorities for Death
Subjects were asked to rate what was extremely important when thinking about their death: Financially burdening family, being at spiritual peace, having loved one’s around, making sure wishes are followed, family not burdened by making decisions, having being comfortable and without pain, and living as long as possible were the options.
In the United States, the highest priority for people when thinking about dying is to not be a financial burden and second is to make sure our care wishes are followed. Only Japan equally shared a concern about the financial burden. Most likely, respondents had different thoughts in mind when selecting this answer. In the US, the concern would be about paying for end-of-life care since co-pays and premiums, the Medicare hospice benefit, and the actual cost of care can leave a family with a hefty medical bill. In Japan, a universal health system covers the cost of hospice, hospitalization and most care. However, in Japan the average funeral costs $17,600 to $26,500 and can be a significant burden on the family. In the US, the average funeral is $7,000-$10,000. Thus, the US respondents were likely concerned about the cost of care while the Japanese subjects were likely concerned about the cost of funerals.
The other three countries ranked having loved ones around or being at spiritual peace in their top 2. All but Brazil rated “living as long as possible” in the last place slot. Besides differences of religiosity and income, another potential factor at play could be population demographics. The average current age of all Brazilians is 29.1 years, meaning that there are more young people than older in this country. Compare that figure to 46.9 years in Japan, 43.8 years in Italy, and 37.8 years in the US. In a 2016 study that I conducted, people under age 50 are more likely to request life sustaining treatment than people over 50. A younger population would thus be more likely to prioritize prolonging life.
Control Over Dying
Globally, the study showed a global preference for dying at home. The US had the highest percentage that chose this preference at 71%. However, only 41% of us expect to die at home. In Japan, only about half of people want to die at home and 58% expect to die in a hospital.
In both the US and Japan, a large majority of people believe that the patient and families should make decisions at the end of life, whereas in Italy and Brazil more decision-making power is believed properly to be in the doctor’s hands. Unfortunately, no distinction was made in the questions between preferences for the patient making the decision and the family making the decision. In Italy and Japan, there has been a history of family decision-making rather than an individual making all the choices that would have been interesting to explore.
Internationally, people want their doctors to be honest with them about their prognoses. Though the US is highest with 88% and Italy is the lowest at 79%. This preference has always been high in the US which values autonomy and individual liberty more than many countries. In previous decades, Italy and Japan have cultural traditions of not necessarily disclosing to a patient that he/she has a terminal condition. Instead, the family was usually told and they decided what the patient should know. Clearly, there is a shift in this matter, likely a result of the export of American autonomy and bioethics to other places.
An old adage that extends back to Elisabeth Kubler-Ross is that the US is a death-denying culture—we do not talk about it. And in terms of perception, US subjects (69%) were most likely to say that talking about death is avoided. However, when asked if they have had conversations and written down their wishes, US subjects are the most likely to have done both. This dichotomy may be a result of our cultural traditions of individualism, autonomy and self-reliance in that we talk to those closest to us and make our own choices (that we write down), but we may not speak to non-intimates about this topic. In the US, 56% of people (and 73% of those over 65 years of age) have had a conversation and 27% (51% over age 65) have written down their wishes. At the other end is Japan where 31% of people have discussed and only 6% have written down wishes. Interestingly, in a 2015 study, researchers reported that between Japan, Korea and Taiwan, the Japanese were the most open about conversations and making plans regarding the end-of-life. Thus Japan may be at the lowest in this larger comparison, but at the top in a more regional look.
For those who have not written down wishes, the major reason in the US is “haven’t gotten around to it” whereas for the other three nations the answer was “never considered it.”
The Take Home
Like many scholars and practitioners in end-of-life care, I often express criticism for the lack of conversation, documentation, and openness to discussing death and dying in US society. This study, however, has opened my eyes to seeing that on a global stage (or at least among these 4 countries), the US is not doing so badly. Of course, one has to accept that the questions asked are the appropriate measures and the important factors in considering end-of-life care experiences. The US seems to talk more about death and dying, documents it more, uses hospice more, has better pain control, greater respect of spirituality, greater awareness of the wishes of our loved ones, more experience helping someone who is dying, and more discussions about our wishes with a health care provider than the other countries. We still have a perception that death and dying is a taboo subject but the data do not bear that out. As bad as we think our responses to death are here, it is more open and engaged than in other places.
The take home message for me is that how we deal with end of life is very much ensconced in our social, cultural, and religious histories as nations. The questions in this survey reflect a US perspective on what makes for a good end-of-life. The research organizations are US-based and thus what they value for end of life care is what was asked. If you write the questions based on your own values, it is not surprising that your country comes out looking the best. If another culture authored these questions they may emphasize and ask questions about collective decision-making, funeral planning, and family involvement in care. The survey did not ask about dying in a child’s or other relatives’ home (only in your own home or hospital). It did not ask if you wanted your family to have a say in how much truth the doctor shared. Nor did it distinguish between the patient making decisions and the family making decisions. On potential questions that represent different values, the US might not look as strong.
One could argue that by writing this survey based on US values and measures, we are exporting our notion of the good death to other countries. Similar to criticisms that US bioethics has tried to colonize the world with a view of individual autonomy and political liberalism, are we doing the same by providing a measure of end of life care?
In part, this state of end-of-life perceptions is a result of decades of advocacy and strong efforts to improve end-of-life care in the US. The U.S. is also a society that celebrates individualism and autonomy, which is reflected not just in the answers but in the questions asked by the researchers. Our cultural value of self-reliance means that we are also more concerned with being a burden on others both for making our decisions and for financial support. Of the 4 nations, the US is the only one without a national health care system and the only country where a family could go bankrupt providing medical care for a loved one. Clearly we have a long way to go as well.