Recently, in doing some research about end-of-life issues, I came across something in a medical paper that stopped me cold. This specific paper was about patients with end-stage heart disease, but it very likely applies to all diseases. It said that in one clinical study, patients who had a DNR died at a much higher rate than patients without a DNR. It was not because the non-DNR patients were resuscitated and the DNR patients were not. The cause was that the non-DNR patients received better care during the months of the study. I actually had to read this information several times before it would sink in.
In doing more research, I found a NIH study that said " Health care professionals inappropriately extrapolate DNR orders to other treatment decisions. A DNR order only applies to the decision to withhold CPR in the event of a cardiopulmonary arrest and should not impact other aspects of care. However, many providers inappropriately alter treatment plans for patients with a DNR order without discussion with the patient or surrogate. ... This may be due to misunderstanding the scope of DNR orders by some providers. Still, other providers intentionally apply DNR orders broadly because they either assume that patients with DNR orders would also prefer to abstain from other life-sustaining treatments or believe that other treatments would not be medically beneficial. They make assumptions to avoid a discussion with patients about end-of-life preferences because of the lack of time or discomfort with having the conversation. While these providers may believe their decisions are made in the patient’s best interest, their judgment is subjected to personal biases and their assumptions can be faulty."
My husband has a DNR order. However, I thought that only meant that they would not try to resuscitate him if his heart stopped. I did not realize that it could mean that he will die sooner because his care would not be complete. I guess the rationale behind this is that if somebody is going to die anyway, why waste treatment on them. I'm now having very serious second thoughts about that DNR order. We discussed this issue extensively, and DH wanted a "do not resuscitate" order, not a "do not treat" order.
Well, and this is just anecdotal, in 45 years of nursing I've never seen anything like that. I've only seen the same level of care, whether a person is a DNR or not. That is, up until they have a life-threatening event, like a heart attack or stroke...treatment may change to palliative instead of heroic measures...but they are certainly still treated. I'd love to hear what others might have experienced during their AD journeys with their spouses, or while caring for anybody else, for that matter.
Were these really big, peer-reviewed studies? Or more like those ones that appear in the NY Times all the time, where 16 people on the Planet Neptune take unspecified amounts of fabric softener and it lowers their blood pressure (they think... because they didn't control for variables), while causing them to develop purple hair growth on their elbows?
I don't mean to sound like a smart aleck, but there are so many poor studies and so much bogus research--remember the profs have to publish, or lose their tenure, or not get it in the first place. So much of that stuff has to be examined carefully and taken with a grain of salt.
I am with elizabeth. In my 43 years of nursing, in numerous settings and hospitals, I too have never seen this Jan K.
I also support elizabeth's other comments.
In the province I live in, the majority of residents in Alzheimer's/dementia units/facilities have a DNR order. The facility where my husband is won't accept a patient without one.
In many ways, our loved ones are receiving palliative care in that everything is done to try and enhance their quality of life by keeping them safe and comfortable as they (we all) try and cope with a fatal disease. I have never questioned that staff in the three facilities my husband has been in hesitate to treat him (and I have a heightened awareness of this due to all my years in critical care).
However, as we have seen often on this site that is not always the case.
Is it an option Jan K for you to take this study to the staff and ask their opinion in terms of your husband's care? I think we all need to be confident our spouse is being treated appropriately. And you want to be sure of your decision Jan K.
I'm not a nurse and had no previous knowledge of DNR orders, but when Ron went on Hospice they required it. I felt they always treated him as he should be treated. When he had a infection in his toe they ordered antibiotics and all the issues that came up were taken seriously. I never felt they neglected anything.
My husband was admitted to hospital around the end of 2014 with suspected pneumonia and bowel obstruction. The hospital staff advised that he probably would not survive the night, but he did. He was out of it. The test for the bowel obstruction were SO frightening and difficult for him, and I knew he was dying, so I swore I would not put him through that again. When we returned to the nursing home I met with staff and advised them that he was never again to go to hospital. We did a “Comfort Care” form, stating that if antibiotics were necessary he should get them, and I should always be advised of any changes, but otherwise no extraordinary measures, and no more hospital.
If you wrote a letter to that effect to his doctor and your spouse’s file, wouldn’t that be sufficient?
Jan K, Thanks for that info. I don’t know which study about the end-stage heart disease you read, but the one it might be (Jackson, Garbeski, Goldberg, et al., 2004), found that patients with DNR orders who were admitted to the hospital after a heart attack were less likely to be treated with effective cardiac medications even if the DNR order occurred late in the hospital stay. They were also more likely to die during hospitalization than patients without DNR orders. The article on the link you provided is a summary of previous studies and it also relies on a survey which found that medical residents in a large urban hospital would be less likely to order life-prolonging treatments, like antibiotics, diagnostic tests, blood transfusions, a central line, or admitting patients to the ICU, for patients who had a DNR. There are other studies that are behind paywalls so I don't know exactly what they found.
I am not qualified to analyze the methodology of these studies but I did see some problems in generalizing the results to our spouses' situations. One of the biggest issues is that these studies are based on decisions made in acute-care hospitals. Our spouses are usually in LTC facilities. Second, the studies are a little out of date. The cardiac study was conducted from 1991 to 1999 and the survey was conducted in 1997. Third, most of the other life-sustaining treatments discussed are not emergency interventions, like DNR. They are things (cardiac medication, blood transfusion, antibiotics) that can be administered after a phone call to the patient’s family. Fourth, doctors treating dementia patients in LTC would find it hard to discriminate according to which patients have DNRs, since most patients probably have them. Finally, I think it is easy to over-interpret the word “care.” Most of us on this site use "care" as a general term (as in "caregiving"), to mean day-to-day personal and medical care, administered by aides, nurses, and doctors. The studies I read do not mean that - they are talking about medical decisions made by doctors.
I agree with you that these studies raise concerns about choices of care, but I question whether they justify having second thoughts about a DNR order.
This happened to me in the Emergency Dept. of a large acute care hospital here in Vancouver last Jan. when I was in for an IV following an acute stomach 'flu: Emergency physician, pen in hand, "Of course, you want a DNR order on your chart." Me, "ARE YOU KIDDING ME???!!! I'm only 85, and I've got a book to write." Physician, "Oh."
Mary, The same thing used to happen to my mother, who was insulted at the suggestion. Until the week before her death at age 98, she was researching and writing and corresponding online. We have often talked here about DNR orders for our spouses, but your comment raises the question:
- What factors should a person who does not have a terminal illness consider in deciding whether to sign a DNR order?
Kevan has a DNR. When he was asked by the team how far they were to go he told then" if you can guarantee that I will be the same as I am now then do what is necessary, but if you can't the let me go" He says he doesn't want to be left in a chair with his head back and his mouth open knowing nothing. He has made it clear to me what I am to allow or not allow. I may not agree with his choice but I will do as he wishes, through tears.
Well, yes, it does come down to quality of life but I'm not sure that answers the question. I have been told that when CPR is performed, the patient often suffers from broken bones. I was wondering how frequent that is and to what extent it affected quality of life in older people. One of the studies mentioned by Jan K said that the CPR survival rate was fairly low. I'm not sure how those factors should influence a decision.
Well, it is utterly individual and subjective. It's going to be different for everyone, and it's impossible to predict what our final illness or crisis will be. You just have to give it your best judgement call, then cross your fingers and say a prayer. (And make sure your advance directives are in place.)
Like Kevan, Larry had everything written up well in advance. I knew exactly what he wanted--- and what a burden that took off of me and, I think, the medical team.
I am soooo just breaking out in hives over what that doctor said to Mary75. "Of course" you want to be a DNR. Of course??? Ooh, I would just have given him such a smack. What a moron. You can't make this stuff up.