Legacy Matters

We need to know more

Finally, we're beginning to talk more about death and dying.  Not just what we know and don't, but how other people are handling some of the most difficult choices we will ever have to make.

Why we know painfully little about dying  in the Washington Post.

Just a few months ago, the National Institutes of Health, led by the National Institute of Nursing Research, held a conference in Bethesda to review the state of the science, with an eye toward giving more useful information to dying patients, their families and their health care providers. The result was mostly a numbing review of missing data. An independent panel at the conference concluded that there is a vast deficit of knowledge about end-of-life symptoms, caregiver burdens and what services should be available

. ......  The gaps in what we know are awesome. We don't have adequate studies on how to deliver effective pain relief to cancer patients or to relieve the struggle to breathe that accompanies some of the most terrible deaths. No data show how many family caregivers face bankruptcy or emotional crisis, or what kind of improvements would most effectively support them. 

1000 times a day in USA Today, 365,000 times a year.

Decisions about withdrawing treatment in hopeless situations occur more than 1,000 times a day in hospitals and nursing homes, according to The Hastings Center, a bioethics think tank. These choices are always heartbreaking, and conflict within families is common. Yet, the conflicts are usually resolved after families consult with physicians, clergy and others and slowly come to grips with the fact that their loved one won't recover.

Even as Doctors Say Enough, Families Fight to Prolong Life in the New York Times

For years, when families and hospitals fought over how to treat critically ill patients, families often pressed to let their loved ones die, while hospitals tried to keep them alive.  But in the last decade or so, things have changed. 

Now, doctors and ethicists say that when hospitals and families clash, conflicts often pit families who want to continue life support and aggressive medical care against doctors who believe it is time to stop.

  "The most common case that comes before the ethics committees," said Dr. John J. Paris, a bioethicist at Boston College, "are families now insisting on treatment that the doctors believe is unwarranted." 

Extraordinary medical advances have stoked the hopes of families. Also, more patients and families feel empowered to make medical decisions, and some are skeptical of doctors' interpretations or intentions.

We need to learn more