Editor’s note: There is an emerging conversation about end-of-life issues and the policy changes needed to give people more control over what happens to them in their final days. This series of stories, and a video produced in partnership with Kansas City public television station KCPT, are about that conversation and the role that experts at two regional institutions are playing in it.
In 1840, Sweden was home to the world’s longest-living people. There, average life expectancy for women was 45 years.
That span is now surpassed in every country, no matter how blighted or war-torn.
In the United States, which ranks 53rd globally, a person on average can expect to survive 78 years and several months, mostly thanks to vaccines, improved sanitation, antibiotics and other health advances. People over 90 now are the fastest-growing part of the U.S. population, and there is a new category — “supercentenarians” — open to anyone who makes it past 110.
“Longevity is good in general. In the specifics, it becomes a very different picture,” said John Carney, head of the Center for Practical Bioethics in Kansas City, Mo., a nonprofit group that among other things is attempting to catalyze productive discussions — at the individual and societal levels — about how to deal with the ethical, emotional and medical issues that complicate the final months, weeks and days or our lives.
By any name, it is a realm most seriously ill Americans enter with anxiety either because of their physical or mental vulnerabilities or because of the mysterious costs.
“There is a growing societal view now that we are doing things to people that they cannot benefit from,” Carney said. “Ask anybody, ‘Do you want to die hooked up to tubes and machines?’ Nobody says they want to. There is this belief that technology will solve all of this for us, but it is humanity and touch and care. That kind of sacred exchange is what makes people whole in the final stage of life.
“We know that a patient in a bed hooked up to everything is not by anybody’s notion in a dignified state. So, if we’re going to change that, total dependence on technology is not the answer.”
Carney said surveys show most people would prefer to die painlessly at home surrounded by loved ones. The realities remain far different and have been described in scholarly articles, government reports, best-selling books, news stories, documentaries and heart-wrenching personal accounts reaching back over the last half century.
“We live in a very particular death-denying society,” the late Dr. Elisabeth Kübler-Ross told the U.S. Senate Special Committee on Aging in 1972. “We isolate the dying and the old, and it serves a purpose. They are reminders of our own mortality.”
Kübler-Ross wrote the 1969 best-selling book “On Death and Dying” based on hundreds of interviews with dying patients. She argued for more home care and patient choice at the end of life. Her calls for change have been taken up by thousands of people, including in the medical world where the relatively new field of palliative or “comfort” care has gained a foothold in major hospitals.
“Death comes with a crawl, or comes with a pounce,
And whether he’s slow or spry,
It isn’t the fact that you’re dead that counts,
But only how did you die?”- Edmund Vance Cooke
Since her book, there have been improvements in the ways Americans die. But experts say they have come slowly and that much more remains to be done.
One sign of progress is that today more people are likely to die with hospice care, which has always focused on the patient’s comfort: physical, mental and spiritual. The hospice movement was just developing when the Kübler-Ross book came out.
The percentage of Medicare beneficiaries who die at home has grown — though it is still a minority — from 15 percent in 1989 to 24 percent in 2007.
Progress and setbacks
Judith Peres, director of the Improving End-of-Life-Care Project at the Pew Charitable Trusts in Washington, D.C., has studied issues of death and dying for decades.
She said she has seen progress and setbacks.
For example, a recent study showed the average number of days spent in hospice has been dropping. Dying people now are more likely to be moved back and forth from hospice to hospital to nursing home in the last 90 days of life, with more days spent in a hospital intensive care unit.
“If you’re going into all those different sites and no one ever knows what you want, then you’re unlikely to have those services delivered,” Peres said.
Studies also show only a small percentage of people complete advance directives, which are documents that tell medical providers what care a person wants in the event he or she can’t communicate. Also, relatively few people legally assign decision-making powers to proxies in the event illness leaves them unable to make their own health care decisions. That can lead to arguments and confusion among distraught relatives and default responses by medical workers.
The lack of preparation persists despite many years of government policies and public awareness campaigns aimed at encouraging it.
Doctors and other medical professionals slowly are becoming more aware of a national effort aimed at encouraging expanded use of Physician Orders for Life-Sustaining Treatment, or POLST forms.
POLST is an end-of-life development pioneered in Oregon in 1991, three years before voters approved the state’s death-with-dignity law in a ballot initiative.
POLST supporters say experience has shown that advance directives do not adequately assure that the desires of seriously ill or frail patients will be honored by harried emergency workers or other clinicians in crisis situations.
The POLST forms are doctor’s orders, prepared in advance in consultation with the affected individual or a legal proxy. They can be attached to the person’s medical record so that health workers can know, for example, that the frail, older person unconscious on the floor before them doesn’t want to be resuscitated or doesn’t want a breathing or feeding tube inserted if revived. Likewise, the orders can communicate if the person wants an all-out effort to extend life regardless of potential consequences.
“What’s important about these orders is that they are putting a conversation into actionable medical orders,” said Dr. Christian Sinclair, a palliative care physician at the University of Kansas Medical Center. “That’s critical in that it helps the medical system work after these tough conversations (about what a person wants or expects at the end of life) have already happened.”
Sinclair was on the Institute of Medicine committee that produced a recent report called “Dying in America.” Among other things, the report concluded the current way of doing things is still “broken.”
One of its chief recommendations was that advance care planning be improved so that more people can end their lives the way they would prefer, which also might result in some cost savings.
“Because most people who participate in effective advance care planning choose maximizing independence and quality of life over living longer, advance care planning can potentially save health care costs associated with unnecessary and unwanted intervention,” the report said.
In Kansas and Missouri, POLST forms are also known as Transportable Physician Orders for Patient Preferences, or TPOPP. The effort to spread their use is being led by the Center for Practical Bioethics, which is working with a consortium of major hospitals, including the KU Medical Center. But much work lies ahead.
Where Kansas ranks for end-of-life policies
In 2002, Judith Peres was deputy director of Last Acts, a group that published a report card comparing end-of-life policies in the 50 states. It included eight measures ranging from advance directive and pain policies to hospice use. Kansas mostly did not score well.
The report showed that Kansas was among several states where fewer than 40 percent of hospitals reported having pain management programs and fewer than 20 percent reported having hospice or palliative (comfort) care programs.
Along with 20 other states, Kansas had between 7.6 percent and 12 percent of people over 65 who spent seven or more days in intensive care in the last six months of life.
The number of Kansas nursing home residents in persistent pain was said to fall between 45 percent and 55 percent.
Kansas ranked among the three lowest states in advance directive policies. It was among the many states where fewer than 30 percent of people died at home and where hospice use was less than 25 percent.
The report was the only one of its kind and there has been nothing similar produced since, so it is difficult to compare then to now. But Peres said she thought little had changed since the report was published.
“It’s a little bit uncertain how we (the states) would look now, but I’d say we’re at pretty much status quo,” she said.
“In Kansas and Missouri, I would say that if you grabbed 10 random physicians, probably two or three would know enough to tell you a little bit about it and maybe one who would be able to tell you more,” Sinclair said. “It’s still in early rollout.”
Medical experts also are trying to make more people aware that though some “rescue” responses such as cardiopulmonary resuscitation (CPR) may prolong life by hours, days or weeks, the trade-off can be extended suffering or more time connected to life support.
Unless they have explicit instructions otherwise from the patient, a legal proxy or a valid doctor’s order, hospital and emergency workers as standard practice will perform CPR when confronted with a frail, old person with multiple health problems whose heart has stopped.
However, studies show that administering CPR in such cases does little or nothing to improve the person’s likelihood of leaving the hospital alive. More likely it will leave the patient with painful broken ribs or other problems that may compound or extend his or her suffering.
“CPR doesn’t work, right? (It) just does not work,” when the patient is old and has multiple chronic conditions, said Dr. David Wensel, a Topeka hospice physician and a palliative care expert and advocate.
Wensel said, and studies show, that even for younger, healthier patients, CPR generally does not assure an exit from the hospital with previous functions intact.
Peres of the Improving End-of-Life-Care Project said there is more public awareness “that we have essentially over-medicalized care at the end of life.”
That awareness, she said, has brought more willingness to talk about death and a grassroots push for a stronger individual voice in what happens at the end of life.
For example, a nonprofit advocacy group started in 2010, the Conversation Project, encourages people to talk with their families and physicians about their preferences for end-of-life care. Death and dying have been the featured topics of TED talks. Informal “Death Café” gatherings continue to pop up in coffee shops across the country.
Companies such as MyDirectives.com have launched. The Dallas-based firm offers easy-to-complete, online advance directive forms that are stored in the digital cloud and can be accessed or updated with a smartphone or other device.
“We’ve signed up consumers in all 50 states and more than 30 countries, and we are continuing to try to triangulate consumers, doctors, nurses and other practitioners, and the business community,” said Jeff Zucker, MyDirectives chief executive officer and co-founder.
This year, 25 states and the District of Columbia — the most ever — are expected to introduce or consider death-with-dignity laws similar to the one pioneered almost 20 years ago in Oregon and then adopted by a couple of others, most recently Vermont. The major opposition to the laws that allow doctors to assist the terminally ill in dying is from the Catholic Church and Right to Life, the group better known for fighting abortion.
The highly publicized death of 29-year-old Brittany Maynard, who became an advocate for Oregon’s law, has fueled some of that activity at statehouses, particularly in her home state of California, according to Peg Sandeen, executive director of the Death with Dignity National Center in Portland, Ore.
But even before Maynard’s story fascinated the public, Sandeen said, “for the past two or three years, we’ve been seeing more momentum.”
She said she was optimistic more states soon would adopt the laws. For the moment, California and the District of Columbia seem the likeliest.
“In Kansas, I think it would be very hard to pass,” she said, though her group tracked House Bill 2150, a languishing measure crafted by the House Vision 2020 Committee.
Despite the growing public interest, death still is a topic most shun.
“We don’t want to talk about death and dying,” Sandeen said. “We want to talk about fitness.”
Kathy Davis, director at KU Medical Center’s KU Kids Healing Place in Kansas City, Kan., routinely counsels children with a dying parent or who are themselves seriously ill or dying.
It distresses her, she said, that many of them have no concept of death save as a TV or video game fantasy. So the reality when it comes is all the more difficult for them to deal with psychologically and emotionally.
“Don’t be afraid for kids to know that people die,” she said. “We would like the opportunity to talk to high school kids and talk with them about end-of-life decisions. But most schools don’t want you to touch that with a 10-foot pole.”
In the old days, death was less hidden.
“When grandpa was laid out in state on the dining room table, it was pretty obvious grandpa wasn’t getting up for dinner,” Davis said.
Watch the KCPT video on end-of-life issues:
— Video produced by KCPT Videographer Dave Burkhardt.