This article first appeared in the St. Louis Beacon, Aug. 7, 2012 - John G. Carney thinks it's time for Missourians to have more conversations about two issues they'd probably rather not discuss — death and dying.
He's president and CEO of Kansas City's Center for Practical Bioethics, which is running a pilot program in which the elderly spell out in more detail the kinds of medical interventions they want or don't want once they are seriously ill or near death.
"We do a poor job of allowing people to talk about values, what (treatment) they would want in the final states of their illnesses, and reflect those values and preferences back to them," Carney says. "That's what the bioethics field is trying to explore."
Such conversations are hard to start, he says, because "we're still a death-denying culture. People joke about Americans being the only people on the planet who think death is an optional event."
He's encouraged that Kansas City area hospitals, nursing homes and EMS workers are willingly taking part in the center's end-of-life pilot project. The organization is developing programs for both Missouri and Kansas.
Missouri already has a do-not-resuscitate, or DNR law, under which people give instructions on whether cardiopulmonary resuscitation, or CPR, should be used in the event their heart or breathing stops. A DNR request is commonly known as the purple form, a reference to the color of paper used for the request.
But Carney says that the DNR law is insufficient to address many circumstances surrounding very sick elderly people. "The purple form is limited. It only deals with CPR. For most people who are frail and elderly, going in and out of the hospital constantly, it's not just about CPR."
The center's pilot program involves forms signed by doctors and patients or proxies, documenting treatment preferences, such as limited or maximum medical intervention, such as tubes for breathing or feeding. The program is aimed mainly at elderly people reaching the end of life. Ideally, Carney says the conversation should begin when the patient is still alert and able to make his or her wishes clear.
The Kansas City area providers are putting into practice what they have learned about the forms and end-of-life conversations with the elderly. The center will later do an evaluation to determine whether the medical service, ranging from all to none, mirrored the wishes that the patients expressed on the end-of-life form. Once the program is refined, Carney expects it to be expanded throughout Missouri and Kansas in about three years.
The pilot grew out of a national end-of-life care program called physicians orders for life-sustaining treatment — or POLST. This program, which originated in Oregon, is in place in more than a dozen states, including Tennessee. Missouri is one of about 15 other states in various stages of adopting versions of those orders.
Some people might assume that a living will serve their purposes just as well, but it does not, says Margaret Carly, executive director of POLST. "If you have a POLST form, you are more likely to have your wishes honored," she says. "The difference is that a POLST form is a medical order and a living will is a legal document. If you show up in the emergency department, they don't have to honor a living will."
But she says the POLST form is honored across all medical settings, from hospitals to nursing homes to EMS services.
"It's not just for use to say you don't want any treatment. You can use it to say you want everything, including resuscitation, medical intervention and feeding tubes. Or you can say you want some of the above or none of the above."
While many POLST programs are created by legislation, Carney says Bioethics will be set up through institutional policies. In other words, hospitals, nursing homes and other providers are being asked to use the forms and start the conversations voluntarily.
"We are not going to force anybody" to use the program, he says, "but we haven't had one hospital that told us this was not a good idea." The same positive reaction has come from nursing homes and EMS groups, he says.
Tennessee's POLST program is enjoying strong support from health providers, says Judy Eads, president of the Tennessee End of Life Partnership.
"The law puts choices in the patient's hands," she says. "The doctor and patient can agree on and decide what's best. If nothing can be done to help patients, they can decide that they don't want feeding tubes or other medical action that will not prolong life."
If the frail elderly are unable to speak for themselves, a son or daughter might serve as a substitute. Regardless of who participates, the goal, Carney says, is to understand who the patient is and what he or she would want in a final stage of an illness.
He says the conversation might go something like this: "Tell me about your mother. This is her sixth time in the hospital in the last four months. Each time, she has had a urinary tract infection, and she's got pneumonia. Tell us about her. What would she want us to do?"
Or if the patient is capable of speaking and says he or she wants treatment and has the capacity to handle it, Carney says the conversation might focus on whether there might be a time "when you will say 'no more' to treatment. If there is a time, tell me what that time looks like, so I can work with you because it's very possible that when we get to that point, you are not going to be able to tell me to stop."
Getting it right
The other side of the coin is that people might be rushed through the conversations without fully understanding all the ramifications of end-of-life care. Or patients may be overly influenced by a physician or family member. Or what if the dialogue is conducted with a caregiver who might want to keep the patient alive solely as a way of collecting money for the in-home care?
The providers receive extensive training on issues involving the end-of-life forms. In addition, the center and Kansas City area hospital ethics committees already have experience with handling a range of issues, including unscrupulous home-care providers, Carney says.
But what if people believe that the conversations are just an excuse to let grandma to die? Carney acknowledges that his group "gets painted as pro-death." On a personal and professional level, however, he says that notion is contradicted by his work in running a hospice program for 15 years. He also reflects on care that his mother provided for his disabled father "24/7 for 26 years, half of their married life. He had four days of hospice services four days before he died."
Carney says he knows "what it's like when people have to face these issues. They are heart-wrenching. But there are better ways to do it, and we have got to find that better way."
The way, he says, includes giving terminally ill patients access to palliative care at hospitals and to hospice rather than subjecting those who don't want it to medical treatment that's doesn't change the outcome and might do more harm than good.
In Missouri, Carney says, and "in the bible belt in general, the default position is that the state's interest trumps the individual interest in protecting life. I don't think that's bad; it challenges us to do a better job in engaging in conversation about what's in the best interest of the patient."
At a time when there is much public discussion about the cost of Medicare, Carney says, "There's plenty of money in the system. We are spending it the wrong way." The problem, he says, is that money is being spent on patients in ways that are harmful, ineffective and don't improve health or change the outcome.
He says the elderly should be allowed to "have those conversations and say 'stop the insanity.' That's what we are trying to do, start the conversations."