By Heather Millar
As I write this, my ailing, 84-year-old mother is upstairs asleep. Mom does not have cancer, but she has a constellation of medical problems that are at least as serious: dementia, diabetes, liver failure, kidney failure, and a host of dental issues. Mom is at home, as she passionately wants to be, and as she made clear long before the dementia clouded her judgment.
Sure, if her blood salts get out of whack as they have dozens of times, or if her blood pressure sinks so low from the kidney issues that slips into a coma, we could take her to the ER. They could make things better for a while, but they won’t be able to solve all the underlying problems. Eventually, all doctors lose the battle against the immovable fact of mortality.
And Mom never wants to go to the hospital again. She won’t, if there’s anything I have to say about it. Since I have her medical power of attorney, I’m reasonably sure my mother is going to stay put.
Alas, I don’t think we can yet say this is the norm for patients in America. As a country, we are pretty poor at managing care when there are no real solutions. We’re a can-do nation and we don’t like it when there’s really nothing to be done, no cowboy to come galloping over the ridge to save us from the ravages of dread disease.
We’re making progress, though. A study just out in the Journal of the American Medical Association shows that the last decade has been a time of tremendous growth in hospice care. More and more hospitals have established palliative care teams. These are the folks who make patients comfortable when there’s no longer any hope of a cure. The fact that these services are becoming more widespread, and more commonly used, is a great cause for hope.
“Our study confirms a previous CDC report that showed more persons are dying at home. People are less likely to die in an acute care hospital,” says the lead author of the study, Dr. Joan Teno of the Warren Alpert Medical School at Brown University in Rhode Island, in a on-line video statement.
Yet Dr. Teno also points out that much work remains to be done. “Our study raises concern about the pathway people take to dying at home,” Teno remarked.
The researchers analyzed the Medicare records of hundreds of thousands of patients from 2000, 2005 and 2009. They found a 23 percent increase in the number of patients who used an intensive care unit in the last 30 days of life. They found a whopping 48 percent increase in the number of “healthcare transitions” —moves from home to ICU or from hospital to skilled nursing facility and so on—in the last 90 days of life. In the last three days before death, they found a 38 percent increase in these changes of medical scene.
I don’t know about you, but I’d rather be peacefully at home in my last days. I don’t want to be hooked up to tubes, sensors and respirators in an ICU, unable to talk to my loved ones. Not being able to talk! To me, that sounds almost as bad as dying. And I certainly don’t want to be bouncing around in an ambulance, moving from place to place.
“We want doctors to talk openly about [a patient’s] prognosis, what the goals of care are, and to make sure there’s a care plan that honors that dying patient’s wishes,” Teno says.
Amen. As a culture, we need to do a lot more talking about end of life. And that responsibility lies not just with doctors, but with us patients. Even if your prognosis is really good, even if you expect many more years ahead, talk about your wishes with your family. Write down how you’d like to be cared for you in your last days. Maybe you’ll want to have everything possible done. Or, maybe you’ll be like my mother, and myself, who’d rather die quietly at home if we have any say in the matter.
But make you wishes known. Not only will that give you peace of mind, it might even help make a dent in skyrocketing medical costs.
Do have any advice for others about drafting an end-of-life plan? Let us know below.