Death and Dying Part 2: End of life decisions for the "oldest old"
There’s a growing interest in the Cincinnati area and across the country in how we die, especially how the medical profession cares for elderly people in the last phase of their lives.
Too Many Pills
Elderly patients with chronic diseases or terminal conditions often have an assortment of drugs they are directed to take each day.
The long-time director of Hospice of Cincinnati, Dr. Rebecca Bechhold, says over prescribing drugs is one of her biggest criticism of American medicine.
“We keep giving these people pills…I see patients every day in hospice programs who are on 15 to 20 medications. Almost none of them have any bearing on their survival and yet their doctors and their families don’t want to discontinue any of them because they have some fantasy that by staying on multiple medications they’re going to live longer,” Bechhold says.
Numerous prescribed drugs are on the menu of many elderly patients, not just those in hospice. Dr. Elizabeth Rabkin is an internist and palliative care specialist at University Hospital. She says managing an elderly patient’s medications is a “balancing act” because their effects can turn around quickly.
“We see that having too many medications, we call that polypharmacy, can be very risky and yet despite the fact that we all know this we see that as people get older they have more conditions and they get on more medications," Rabkin says.
Bechhold, an oncologist, treats cancer patients. “I see it time and again when someone’s elderly and the doctor says well I think he can tolerate chemotherapy, let’s try it and they take one dose and they’re miserable and it does sort of push them over the edge and they don’t do well after that. So I think we have to be very careful.”
Who’s in Charge?
Primary care doctors like Rabkin, aren’t always able to provide the treatment coordination they would like to offer. She says the treatment of seriously ill patients nowadays is “fragmented”.
“…At the end of life patients will see up to 7 to 10 different doctors or specialists. They may see 30 doctors or 40 doctors depending on where they’re hospitalized, how many times they’re hospitalized, [and] for how long," Rabkin says.
A specialist, like Bechhold, may end up filling the coordinating role of the primary care doctor. Bechhold often asks a patient why he or she is on a drug.
“I won’t discontinue it myself but I will certainly raise the question and ask them to go discuss it with the doctor who prescribed the medication. Because if they can get off of it I want them off of it."
“I think you have to understand that the way our health system is set up is doctors are paid to do something to you,” Bechhold adds. “We are not paid to sit there and spend time to talk to you and say these are all the choices you have … I could do this drug … I can still get paid to give it to you and your insurance will cover it, but it has really zero chance of making you live longer.”
Another problem doctors face is many elderly patients have dementia and cognitive impairment.
“I think you have to be really careful about that,” Rabkin says. “You have to be very mindful of whether you’re dealing with someone who is really able to make complex decisions for themselves.”
Bechhold sees the same problem. “I’ve seen patients discharged from hospital with 13 prescriptions, no one to help them get them…or understand what they’re doing. And also a follow up appointment that they don’t know how to get to…and sometimes they have multiple follow up appointments.”
Studies show most people say they wouldn’t want to live with advanced dementia. Therefore, Bechhold says, people in the early stages of dementia should discuss with their families and doctors whether they want to continue treatments that are likely to extend their lives.
“Well if they don’t want to exist like that,” says Bechhold, “why do we have them on a statin to protect their heart when they have progressive dementia. I think we need to start picking and choosing our battles.”
Bechhold believes more thoughtful preparation for death would make physician assisted suicide laws unnecessary. “Those laws are people saying I want to be in charge. But they can be in charge…you are in charge. You can make decisions and that’s what we should be doing, making decisions all the way through our life so that we don’t end up in a place where we feel trapped and that our only exit choice is suicide.
Susan Brogden of Harrison helped her mother, Betty Young, face the end of life when she was diagnosed with stage four cancer at age 85. Despite encouragement from her doctor, Mrs. Young chose not to have surgery and chemotherapy and died three months later.
“I’ve been so glad so many times, from the moment of her diagnosis until now that she chose to do what she did,” Brogden said.
She wrote a column entitled “I Want to Die Like my Mother did” for the Cincinnati Enquirer in July 2011.
“I actually got quite a bit of reaction … even in some cases [from] people who in normal circumstances I would never hear from, who called to say they had been or were in a similar situation and they very much appreciated the position I had taken in that column and felt it was the right thing to do.”
Doctors agree that patients should discuss end of life issues with their families and their physicians long before the end is near. Dr. Gaurang Gandhi, a cardiologist, has taken part in a physician coaching session about how to handle end of life conversations. He believes everyone needs to know how to have this difficult talk.
“This could be a very good topic to talk on a Sunday morning at a church. This is everybody’s job. I don’t think it’s a physician’s job only. It’s everybody in the community’s job who can understand and talk about it.” Gandhi is part of an effort by Hospice of Cincinnati and several partners to encourage these conversations.
Doctors say it’s important for everyone to sign advanced directives for family and physicians. And it’s important to designate someone you trust to make care decisions for you, if you cannot.