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Quality of life at the end of life

Our Oh-So-American End Of Life Hopes: How We Compare In Global Perspective

This spring, The Economist published the results of a survey that inquired into hopes and worries regarding the end of life. The study compares responses from residents of Brazil, Italy, Japan and the U.S. The data was part of a larger study conducted by the Kaiser Family Foundation to examine the perceptions of health in these countries.

The extensive study compares conversations with medical providers, experiences with the death of a loved one, awareness of a loved one’s care wishes, experience with pain, access to treatment, as well as awareness and use of hospice. Interestingly, hospice awareness among U.S. respondents (36 percent) was three times higher than that of any other nation.

Goals of End of Life Care

The Japanese expressed the most concern about “helping people die without pain, discomfort and stress.” More than 80 percent selected the option; in the U.S., fewer than three-quarters did.

Half of Brazilians indicated that “extending life as long as possible” is their primary concern. The results make sense in cultural and historical context; Brazil is a highly Catholic country, whereas Japan has a long history of greater choice at the end of life. However, results from the predominately Catholic Italy revealed that only 13 percent focused on the prolongation of life. This difference may be related to Brazil’s higher rate of religiosity.

Priorities for Death

Those surveyed were asked to rate “extremely important” concerns when considering their own death. Options included: financially burdening family, being at spiritual peace, being surrounded by loved ones, ensuring wishes are followed, burdening loved ones with decisions, being without pain, and living as long as possible.

In the U.S., avoiding financial burden emerged as the highest priority, followed by ensuring that care wishes are followed. Only the Japanese shared the same level of financial concern. Most likely, the Americans thought differently than their Japanese counterparts when selecting an answer. The actual cost of end of life care in the U.S. can leave surviving loved ones with a hefty bill, between co-pays and premiums. In Japan, a universal health system covers the cost of hospitalization, hospice and most other care. However, the average funeral there can approach $26,000. In the U.S., the expense is typically less than half that.

Those from the remaining three countries ranked being with loved ones and being at spiritual peace as their top two priorities. All but Brazil rated “living as long as possible” in last place. A potential factor for the difference could be demographics. The average age among Brazilians is 29. Compare that figure to 47 in Japan, 43 in Italy, and approximately 38 in the U.S. In a 2016 study I conducted, those under 50 were more likely to request life-sustaining treatment than those older than 50. A younger population, therefore, would be more likely to prioritize prolonging life.

Controlling Death

The study showed a global preference for dying at home. The highest percentage – 71- belongs to the U.S. However, only 41 percent expect to do so. Among the Japanese, only half wish to die at home, but 58 percent expect to die in a hospital.

In both countries, a large majority indicate that a patient and his or her family should make decisions at the end of life. In Italy and Brazil, more decision-making power is believed to belong to physicians. Unfortunately, no distinction was made between preferences for the patient to make the decision or the family to do so. Italy and Japan share a history of family decision-making.

Internationally, patients want doctors to be honest about prognoses. Close to 90 percent of Americans said they hope for such. Italy’s response was the lowest, but still 79 percent. The American values of autonomy and individual liberty make this finding unsurprising. In previous decades, Italy and Japan have had cultural traditions of not necessarily disclosing a terminal condition. Instead, a patient’s family was told, and it was for them to decide what the patient should know. There has been a clear shift in the matter, likely due to the export of American bioethics.

Elisabeth Kubler-Ross said that the U.S. is a death-denying culture. In terms of perception, U.S. respondents (69 percent) were most likely to say that talking about death is avoided. However, when asked if they have had conversations and written down their wishes, they are the most likely to have done both. This dichotomy may stem from our tradition of individualism, autonomy and self-reliance; we speak to those closest to us, but perhaps we don’t to those we don’t know well. More than half of Americans have had a conversation about their wishes, and 27 percent have written those wishes down. At the other end of the spectrum is Japan, where less than a third have had such a discussion. Only six percent have documented their care choices. Interestingly, a 2015 study reported that between Japan, Korea and Taiwan, the Japanese were the most open about making end of life plans. Japan may be at the lowest in this larger comparison, but at the top when taking a more regional look.

The Take Home

Like many, I criticize the lack of conversation, documentation and openness to discussing death and dying in our culture. However, this study opened my eyes to seeing that on a global stage, we are not doing so badly. According to this data, as bad as we think our responses to death currently are, we are more open and engaged than those elsewhere.

How we deal with the end of life is very much ensconced in our social, cultural and religious histories as nations. The questions in this survey reflect an American perspective on what makes for a good end of life. The research organizations are based in the U.S., and thus the survey’s questions reflect that context. An organization from another culture may have inquired into collective decision-making, funeral planning and family involvement in care. When answering questions that represent different values, the U.S. might not look as strong.

One could argue that we are exporting our notion of a good death. This state of end of life perceptions results from decades of efforts to improve care. American culture celebrates individualism and autonomy, values reflected not just in the answers, but in the questions posed. Our self-reliance means that we are also more concerned about burdening others with decision-making and financial support. Of the four nations, the U.S. is the only one without a national health system. It is the only country where a family could go bankrupt receiving medical care.  Clearly, we have a long way to go as well.