Elderly people in nursing homes not so preoccupied by death
Researchers have created a guide on how nursing home staff can talk to patients about end of life issues. But the old folks weren't necessarily so concerned about the end.
“Dying is a big event in life. To be able to contribute to somebody's life having a good ending feels very meaningful,” says Trygve Johannes Lereim Sævareid.
Sævareid has participated in a research project that looks at how the Norwegian health service can make this happen for the elderly.
He recently defended his doctoral thesis at the University of Oslo on what is called advance care planning. These conversations, about thoughts and desires for what is to come, have become far more common in Norwegian nursing homes. However, many health care providers are uncertain about how to talk to patients about the most serious issue facing them, namely the end of life.
They need help.
It may soon be too late to ask
Elderly people who are on the verge of death are often unable to participate in their own end-of-life decisions. And when the time actually comes, it may be too late to ask. The vast majority of people living in nursing homes in Norway have dementia.
“If we want patients to be able to express their opinion, such as about life-extending treatment, we have to talk to them while they are able to respond,” says Sævareid.
In these conversations, health professionals talk to the patient, and ideally with relatives, about decisions related to life-prolonging treatment as death approaches.
Some of these questions include: When your life is nearing the end, what is important to you then? Is it important to live as long as possible?
Health professionals need training
When the researchers initiated this project, they were curious about whether and how nursing staff talk to patients about these issues.
They visited nursing homes that conducted advance care planning. The researchers saw that both the patient and the nurse were often passive in the conversation. It was the doctor who dominated the conversation. And the doctor preferentially talked to relatives, not the patient.
The researchers quickly found that health professionals need training to be able to undertake these conversations.
It's not just that you sit down and talking about these things, not even for health care providers who have been working with elderly patients for a long time, says Sævareid.
The researchers therefore developed a guide for health professionals and are now working on guidelines and teaching on how the guide can be used.
“For us, it is very important that this is a conversation for and with the patient. For that reason, the patient must be an active participant. We don’t start off by talking about death right away. We start gently and get a feel for the mood before we start talking about the end of life. We ask about thoughts on the future. For example: Is there anything you're worried about? Is there something you want to experience?”
Old people want to live
The advance care planning conversations were carried out about three months after the elderly patients had first arrived at their nursing homes.
Sævareid was somewhat surprised that nursing home residents were not really concerned about the end of life. They seemed to have entered a new phase of life and almost everyone he interviewed was satisfied with this existence.
“For some people it was about feeling safe. They were looked after. In fact, several people felt that their health had improved after coming to the nursing home,” says Sævareid.
One common thread was that people knew death was coming, but they wanted to take one day at a time. They also trusted that people around them would take care of them and make good decisions.
“Everyone we talked to had some kind of cognitive failure. We knew that would make it more difficult for them to imagine this kind of situation in the future. It may have influenced their answers. But it may also be that the conversation plants a seed and that they will need to talk about it later,” he said
Nevertheless, the patient’s values did come through, although not much about specific wishes. Most emphasized that they were doing well now and that they wanted to keep living.
“When we as health professionals focus a lot on medical treatments at the end of life, it may be our own needs that we are meeting, not the patient's,” says Sævareid.
Conversations had a new feel
The researchers reviewed medical records before and after the nursing home had started using the guidelines. In addition, they observed conversations and interviewed those who participated in the conversations.
“We found a clear difference. The conversations had a completely different feel after we introduced the guidelines and trained staff how to use it. The patients were much more active in the conversation, even those who had begun to develop dementia. The health care staff began addressing the patient, not just the next of kin,” Sævareid said.
He emphasizes that it is important that there be more than one conversation. It is important to recognize that conversations about advance care planning are a process, because the patient’s preferences may change along the way.
“An 80-year-old who says life is worth nothing if he were to get urinary incontinence, might think differently about it if it actually affects him. Therefore, it's important to return to the issue and see if preferences still apply,” Sævareid said.
Tested in the hospital
Marc Ahmed is a consulting physician in geriatrics at Oslo University Hospital. He has been instrumental in creating a guide for people who talk to the elderly and seriously ill patients on the verge of death. The hospital has tested it on a small group of patients.
The purpose of the guide was to find out something about the patient's values. Ahmed thinks it is difficult to find the right treatment at the end of life. A conversation can help create a foundation for treatment.
A total of 11 out of 12 patients wanted to have the conversation and were positive about it. They said they lacked information. They did not feel offended that these topics were addressed.
Almost everyone wanted to participate. They also wanted their relatives' voices to be heard, even though they knew the decision was with the attending physician, he says.
“You can’t have this conversation in ten minutes. Although I spend an hour in these conversations, that’s not much if you compare it with the amount of time an emergency medicine practitioner spends figuring out the right thing to do when patients are on a respirator,” says Ahmed.