How to explain DNR to elderly father
May 14, 2019 12:48 PM Subscribe
How do you explain, in ethical and commonsense terms, what it actually means to have a 'Do Not Resuscitate' order?
My dad has been referred by his physician for hospice/palliative services, due to his failing heart. Hospice want him to sign a DNR (strongly encouraging, rather than forcing), but I can see that he doesn't really understand what he is signing, and I am less than impressed with their ability to explain it in a way that he understands, and consents to. He has some mild dementia, and has never had much of an understanding of medical things. He is also not comfortable talking about or thinking about death.
FWIW, he has signed a DNR in the past (with encouragement from my mother). My dad is in full, clearly stated agreement that he doesn't want extraordinary medical intervention, and definitely does not want to spend his last days hooked up to machines. However, he also seems to be a little confused about the line between what are full-on medically invasive measures that may prolong life without any real benefit, and accepting, say, basic CPR, which I think he sees as a good-faith effort to start his heart again, and as something that is possibly desirable. I also think he worries that by saying he doesn't want to be resuscitated, he is volunteering to die, and finds this contrary to his religious beliefs.
Some of this is informed by a lack of understanding of what resuscitation looks like for a man of his age (87) and poor health. The hospice people tried to paint a very scary picture of broken ribs, trauma and high failure rates, but this felt more like a coercive conversation, and I am interested in what an informed conversation might look like.
My dad has been referred by his physician for hospice/palliative services, due to his failing heart. Hospice want him to sign a DNR (strongly encouraging, rather than forcing), but I can see that he doesn't really understand what he is signing, and I am less than impressed with their ability to explain it in a way that he understands, and consents to. He has some mild dementia, and has never had much of an understanding of medical things. He is also not comfortable talking about or thinking about death.
FWIW, he has signed a DNR in the past (with encouragement from my mother). My dad is in full, clearly stated agreement that he doesn't want extraordinary medical intervention, and definitely does not want to spend his last days hooked up to machines. However, he also seems to be a little confused about the line between what are full-on medically invasive measures that may prolong life without any real benefit, and accepting, say, basic CPR, which I think he sees as a good-faith effort to start his heart again, and as something that is possibly desirable. I also think he worries that by saying he doesn't want to be resuscitated, he is volunteering to die, and finds this contrary to his religious beliefs.
Some of this is informed by a lack of understanding of what resuscitation looks like for a man of his age (87) and poor health. The hospice people tried to paint a very scary picture of broken ribs, trauma and high failure rates, but this felt more like a coercive conversation, and I am interested in what an informed conversation might look like.
The DNR that my grandparents signed, and that I had to to enforce, specifically laid out scenarios in which they would resuscitate and in which they wouldn't, and definitely made a distinction between something along the lines of CPR to prolong non-machine-assisted living, and something along the lines of intubation to keep someone alive indefinitely but hooked up to a machine.
An informed conversation would definitely include going over at least a small handful (I think my grandparents had a half dozen?) scenarios that involve extents of trauma.
Also, and this may be just my experience at one of the worst hospitals in our vicinity, but getting a healthcare facility to respect a DNR was about ten times harder than having them resuscitate, which they kept doing against my wishes. This may be why the hospice is warning you as my experience with the hospice was a lot more pleasant and respectful toward my grandparents than the hospital.
posted by griphus at 1:13 PM on May 14, 2019 [5 favorites]
An informed conversation would definitely include going over at least a small handful (I think my grandparents had a half dozen?) scenarios that involve extents of trauma.
Also, and this may be just my experience at one of the worst hospitals in our vicinity, but getting a healthcare facility to respect a DNR was about ten times harder than having them resuscitate, which they kept doing against my wishes. This may be why the hospice is warning you as my experience with the hospice was a lot more pleasant and respectful toward my grandparents than the hospital.
posted by griphus at 1:13 PM on May 14, 2019 [5 favorites]
I couldn't tell whether it is you or him (or both) that isn't clear about what resuscitation looks like for an elderly man in poor health. The hospice's scary picture is almost certainly essentially accurate, given that success rates for CPR in the population as a whole are at around 10%. I realise that doesn't necessarily mean that they're getting informed consent as a result.
posted by plonkee at 1:37 PM on May 14, 2019 [19 favorites]
posted by plonkee at 1:37 PM on May 14, 2019 [19 favorites]
Best answer: Please alert all family members that if your father does move forward and agree to DNR status, that they should NOT call 911 if he has a medical "emergency", as rescue workers are summoned specifically to do CPR, intubate, shock, give cardiac drugs and transport to an ER. And it is hard to stop a resuscitation once it has started.
When my father entered home hospice this was not obvious to most of his worried family, who had never really thought about this issue. The role of 911 is to do all the things your father has said he doesn't want, and if you imagine they would stop at "just CPR" I think you will be disappointed. I can't tell you the number of terminally ill hospice patients revived for a few horrible ICU days by 911 when families got scared and called 911. I saw this several times a year as an ICU nurse, and it is terribly guilt-producing for family who had no idea what would actually happen when they made that call. This is why hospice is trying so hard to explain this issue to your father. It's really, really important that your father understands the issues and makes an informed decision. The last thing you all need is unsettled confusion when he inevitably does have a scary medical issue. Home hospice, in my experience, is about 5% hospice staff on site, and 95% family. You all need to be on the same page.
My dad was in hospice for several months, but I was told by his nurses that patients typically die within two weeks of entering their program, during which period patients and families struggle with the reality of a loved one's imminent death. Most of them have never really thought of the specifics of scary medical emergencies in the context of terminal illness and hospice. I'm so sorry your family is faced with this.
posted by citygirl at 1:52 PM on May 14, 2019 [36 favorites]
When my father entered home hospice this was not obvious to most of his worried family, who had never really thought about this issue. The role of 911 is to do all the things your father has said he doesn't want, and if you imagine they would stop at "just CPR" I think you will be disappointed. I can't tell you the number of terminally ill hospice patients revived for a few horrible ICU days by 911 when families got scared and called 911. I saw this several times a year as an ICU nurse, and it is terribly guilt-producing for family who had no idea what would actually happen when they made that call. This is why hospice is trying so hard to explain this issue to your father. It's really, really important that your father understands the issues and makes an informed decision. The last thing you all need is unsettled confusion when he inevitably does have a scary medical issue. Home hospice, in my experience, is about 5% hospice staff on site, and 95% family. You all need to be on the same page.
My dad was in hospice for several months, but I was told by his nurses that patients typically die within two weeks of entering their program, during which period patients and families struggle with the reality of a loved one's imminent death. Most of them have never really thought of the specifics of scary medical emergencies in the context of terminal illness and hospice. I'm so sorry your family is faced with this.
posted by citygirl at 1:52 PM on May 14, 2019 [36 favorites]
The way the hospice seems to be describing the DNA decision sounds largely accurate. In my (hospital but not medical) CPR training I was taught that good chest compressions don't always break ribs but they very often do and it is expected they will in frail elderly people.
They also talk to us about the distinction between CPR to restart a heart that was the first thing to fail (usually an electrical problem in a fit healthy person) versus CPR to restart a heart that stopped because the body it is in is dying. In the second case you might restart the heart but CPR doesn't fix the thing that made it stop, so you end up in intensive care or you end up with a body that carries on dying as it was before.
posted by kadia_a at 2:04 PM on May 14, 2019 [10 favorites]
They also talk to us about the distinction between CPR to restart a heart that was the first thing to fail (usually an electrical problem in a fit healthy person) versus CPR to restart a heart that stopped because the body it is in is dying. In the second case you might restart the heart but CPR doesn't fix the thing that made it stop, so you end up in intensive care or you end up with a body that carries on dying as it was before.
posted by kadia_a at 2:04 PM on May 14, 2019 [10 favorites]
Best answer: In addition to the Five Wishes discussion booklets, which I used when I did home calls to assist with planning, the Advanced Care Planning website has a patient section with clear video explanations. I've watched the provider ones and the pilot ones they made in Hawaii and was very impressed.
posted by cobaltnine at 2:07 PM on May 14, 2019 [3 favorites]
posted by cobaltnine at 2:07 PM on May 14, 2019 [3 favorites]
Just seconding that CPR is not a milder or intermediate intervention in the elderly. It is only a bridge to full medical/surgical intervention in a hospital. It should be on the top of the list of things to avoid in a DNR, because once an EMT starts it, you are on a hard to stop path to more advanced care.
posted by mercredi at 2:29 PM on May 14, 2019 [6 favorites]
posted by mercredi at 2:29 PM on May 14, 2019 [6 favorites]
In my jurisdiction DNRs can only be enforced against Doctor’s actions. So if you call 911 and present the DNR the paramedics legally must take all action to save the life (if the patient refuses they are to wait until the patient loses consciousness and then using the benefit of implied consent they are to revive the patient for transport to a Doctor who will then take the DNR to another Doctor to approve the discontinuation of the lifesaving actions). CPR is VERY traumatizing (to experience and to watch) and unless also used in conjunction with a defib on a young, otherwise healthy, person, will most likely not prolong life for long and will significantly reduce the quality of life.
The information given by Hospice seems accurate. I have already lost my dad and I know how difficult these end of life decisions are. Please talk to Hospice yourself so you fully understand the medical implications on not signing the DNR, as well as seeking grief counselling (grief while they are still living is the hardest).
posted by saucysault at 2:33 PM on May 14, 2019 [3 favorites]
The information given by Hospice seems accurate. I have already lost my dad and I know how difficult these end of life decisions are. Please talk to Hospice yourself so you fully understand the medical implications on not signing the DNR, as well as seeking grief counselling (grief while they are still living is the hardest).
posted by saucysault at 2:33 PM on May 14, 2019 [3 favorites]
Only 3% of people over 80 survive CPR
CPR rarely works – why do people have so much faith in it?
A nurse's graphic account of failed CPR on an older patient in bad health:
CPR rarely works – why do people have so much faith in it?
A nurse's graphic account of failed CPR on an older patient in bad health:
This new pt was an older man with a medical-condition necklace on: heart failure, diabetes, etc. [...]posted by foxfirefey at 3:19 PM on May 14, 2019 [12 favorites]
Flash pulmonary edema filled his breathing tube with bubbling red at every compression. His heart wobbled through ventricular fibrillation with the kind of half-assed exhaustion that doesn't respond to shocks. Med after med failed to get a response; shocks and compressions were like rocks thrown down a well. In the hall, his family wailed and collapsed against the wall, and shouted for us to save him. A nurse from down the hall gently guarded the door to keep the more frantic family members from seeing the bloody wreck of a corpse that we were preparing to stop beating.
We called it after twenty minutes. His chest was the texture of new banana pudding, before the cookies have a chance to get soggy-- bone fragments scraping the sternum, muscle and fiber pounded to a pulp.
CPR is violent. It's effective enough to give us a chance to perform life-saving interventions, but if the meds and shocks don't work... well. Eventually it just becomes mutilation of the dead, the hidden ritual of American healthcare, the sacrament of brutality by which we commit our beloved to their resented rest.
Best answer: I'm so sorry you're going through this. Hugs if you want them.
Sadly, the scary picture painted by hospice is also the realistic picture. CPR in the movies is a couple of moderate pats on the chest and instant revival. CPR in reality involves multiple rounds of slamming several hundred pounds of burly paramedic into the patient's breastbone -- imagine being in a head-on car accident where your chest hits the steering wheel at, say, 50 mph, now multiply that by 100 times a minute. It's really traumatic for everyone involved, and outcomes are not stellar -- even if a person is revived, there's often permanent organ damage especially high-oxygen-demand organs like the brain and kidneys.
A lot of hospice services, and hospitals as a whole, are starting to frame this as Allow Natural Death (AND) rather than DNR, because it's conceptually a lot easier to allow a natural process to unfold (which is what it is!) than withhold an intervention. That angle may make it easier to talk about for you and your dad.
posted by basalganglia at 3:22 PM on May 14, 2019 [20 favorites]
Sadly, the scary picture painted by hospice is also the realistic picture. CPR in the movies is a couple of moderate pats on the chest and instant revival. CPR in reality involves multiple rounds of slamming several hundred pounds of burly paramedic into the patient's breastbone -- imagine being in a head-on car accident where your chest hits the steering wheel at, say, 50 mph, now multiply that by 100 times a minute. It's really traumatic for everyone involved, and outcomes are not stellar -- even if a person is revived, there's often permanent organ damage especially high-oxygen-demand organs like the brain and kidneys.
A lot of hospice services, and hospitals as a whole, are starting to frame this as Allow Natural Death (AND) rather than DNR, because it's conceptually a lot easier to allow a natural process to unfold (which is what it is!) than withhold an intervention. That angle may make it easier to talk about for you and your dad.
posted by basalganglia at 3:22 PM on May 14, 2019 [20 favorites]
This may be obvious, but since his religion is part of the issue, have you brought in someone from his tradition who can speak to his concerns?
posted by FencingGal at 7:11 PM on May 14, 2019 [3 favorites]
posted by FencingGal at 7:11 PM on May 14, 2019 [3 favorites]
CPR isn't for starting hearts! It's for forcibly pumping blood round the body in the very short term until paramedics arrive to provide more drastic interventions.
posted by quacks like a duck at 11:30 PM on May 14, 2019 [7 favorites]
posted by quacks like a duck at 11:30 PM on May 14, 2019 [7 favorites]
If a hospital is still involved, you should know that in some states Do Not Resuscitate ≠ Do Not Intubate. This may well be a separate issue.
posted by bryon at 11:43 PM on May 14, 2019
posted by bryon at 11:43 PM on May 14, 2019
However, he also seems to be a little confused about the line between what are full-on medically invasive measures that may prolong life without any real benefit, and accepting, say, basic CPR, which I think he sees as a good-faith effort to start his heart again, and as something that is possibly desirable.
It sounds like he's working from the assumption that CPR would restart his heart and that we would then still be alive in similar health to how he is now. Sadly this is extremely unlikely in an elderly person with chronic health problems. In addition to the broken ribs etc it's quite likely he would then need the machines etc he doesn't want to keep him alive as whatever caused the heart to stop would be unlikely to just go away. Would explaining that help to clarify his wishes?
posted by *becca* at 4:07 AM on May 15, 2019 [3 favorites]
It sounds like he's working from the assumption that CPR would restart his heart and that we would then still be alive in similar health to how he is now. Sadly this is extremely unlikely in an elderly person with chronic health problems. In addition to the broken ribs etc it's quite likely he would then need the machines etc he doesn't want to keep him alive as whatever caused the heart to stop would be unlikely to just go away. Would explaining that help to clarify his wishes?
posted by *becca* at 4:07 AM on May 15, 2019 [3 favorites]
Best answer: The way my grandmother (also with dementia, also religious) understands it is that if God says it is her time to go (if her heart stops beating or she stops breathing), then we will let her go, and not drag her back.
She is ready to go, though, and has verbalized wishes that God would take her. So she is happy to sign on to this.
Also, she is Catholic, a religion which draws a very clear line between taking an action to commit suicide (a grave sin), and not taking an action to prolong life (not a sin) — so that is where she’s coming from religiously.
Ultimately, this is your dad’s decision, unless and until he is truly unable to decide for himself. It’s important that he get all the true, relevant information about what receiving CPR would actually involve (as others have provided in this thread), and it’s important that he should express what he does want his final days to be like, and understand what he needs to do to make sure that happens. But it’s also of absolute importance that he be allowed to make his own decision and have it fully respected, even if others disagree with his reasoning.
Clearly you get this, with your sense that this conversation felt coercive and not being OK with that. But I wanted to say it out loud because sometimes it gets lost in the discussion of why a DNR is a good idea. I certainly think it is a good idea! But it ultimately has to be his own decision.
(Background: I have fairly recent experience with a family member choosing to stop receiving life-sustaining treatment. I would have fought anyone who tried to override his choice. It’s absolutely the choice I would have made in his place. But I also had the biggest fight of my life with his wife a few years earlier, before he made that decision, when she got angry that he wasn’t fully compliant with one treatment and threatened him with calling hospice to stop all treatment. I got really enraged. Because that was his choice to make, not hers or anyone else’s.)
posted by snowmentality at 4:49 AM on May 15, 2019 [4 favorites]
She is ready to go, though, and has verbalized wishes that God would take her. So she is happy to sign on to this.
Also, she is Catholic, a religion which draws a very clear line between taking an action to commit suicide (a grave sin), and not taking an action to prolong life (not a sin) — so that is where she’s coming from religiously.
Ultimately, this is your dad’s decision, unless and until he is truly unable to decide for himself. It’s important that he get all the true, relevant information about what receiving CPR would actually involve (as others have provided in this thread), and it’s important that he should express what he does want his final days to be like, and understand what he needs to do to make sure that happens. But it’s also of absolute importance that he be allowed to make his own decision and have it fully respected, even if others disagree with his reasoning.
Clearly you get this, with your sense that this conversation felt coercive and not being OK with that. But I wanted to say it out loud because sometimes it gets lost in the discussion of why a DNR is a good idea. I certainly think it is a good idea! But it ultimately has to be his own decision.
(Background: I have fairly recent experience with a family member choosing to stop receiving life-sustaining treatment. I would have fought anyone who tried to override his choice. It’s absolutely the choice I would have made in his place. But I also had the biggest fight of my life with his wife a few years earlier, before he made that decision, when she got angry that he wasn’t fully compliant with one treatment and threatened him with calling hospice to stop all treatment. I got really enraged. Because that was his choice to make, not hers or anyone else’s.)
posted by snowmentality at 4:49 AM on May 15, 2019 [4 favorites]
I am so sorry you are dealing with this. Unfortunately these issues are the reality for many of us caring for aging family.
The explanation provided to you and your family about the effects of CPR on the elderly and frail was almost exactly the same thing the ICU doctor told me about my Mom when she was suffering an acute cardiac event associated with pneumonia. CPR may have saved her, but IF she recovered, quality of life would be significantly reduced. My Mom had an Advanced Directive, a DNR, but ultimately the family decided to remove life support.
Last year, my 88 year old Aunt with cerebral palsy spent a week in the hospital after her skilled nursing facility decided to send her to the emergency room. The ER doctor called me to discuss my Aunt's DNR. When she returned to the facility, the staff there discussed the option of signing a Physician Orders (or Provider Orders) for Life Sustaining Treatment - POLST - for my Aunt. A POLST is for patients that are very frail/seriously ill, or at end of life. It details exactly what the patient wants at end of life if a medical emergency arises. The form is signed by the doctor, so it is considered medical orders. A POLST works with an Advanced Directive; an Advanced Directive provides an idea of what the patient would want medically if they cannot speak for themselves, and a POLST tells the emergency medical team what to do, or not do.
I'm in California, and the POLST form I signed for my Aunt had three different levels of medical intervention desired, from do everything possible, to comfort care only.
You may want to discuss the POLST option with your Dad's hospice staff. Every state has a different POLST standard - in some states it is still just legislation.
POLST
posted by socrateaser at 8:27 AM on May 15, 2019 [3 favorites]
The explanation provided to you and your family about the effects of CPR on the elderly and frail was almost exactly the same thing the ICU doctor told me about my Mom when she was suffering an acute cardiac event associated with pneumonia. CPR may have saved her, but IF she recovered, quality of life would be significantly reduced. My Mom had an Advanced Directive, a DNR, but ultimately the family decided to remove life support.
Last year, my 88 year old Aunt with cerebral palsy spent a week in the hospital after her skilled nursing facility decided to send her to the emergency room. The ER doctor called me to discuss my Aunt's DNR. When she returned to the facility, the staff there discussed the option of signing a Physician Orders (or Provider Orders) for Life Sustaining Treatment - POLST - for my Aunt. A POLST is for patients that are very frail/seriously ill, or at end of life. It details exactly what the patient wants at end of life if a medical emergency arises. The form is signed by the doctor, so it is considered medical orders. A POLST works with an Advanced Directive; an Advanced Directive provides an idea of what the patient would want medically if they cannot speak for themselves, and a POLST tells the emergency medical team what to do, or not do.
I'm in California, and the POLST form I signed for my Aunt had three different levels of medical intervention desired, from do everything possible, to comfort care only.
You may want to discuss the POLST option with your Dad's hospice staff. Every state has a different POLST standard - in some states it is still just legislation.
POLST
posted by socrateaser at 8:27 AM on May 15, 2019 [3 favorites]
Response by poster: Thanks for all these great answers so far. I'm fully aware of the futility of life-saving efforts for someone with his health/age status, but I'm struggling with how to have a respectful and loving conversation about that with someone who isn't sure how he feels about it. I know the nurses meant well, but it just came off as scare tactics meant to coerce him into signing the form they needed him to sign.
Griphus, it is exactly these scenarios that I am grasping for. Informed consent is a slippery thing. I don't think my dad will be persuaded by alarming headlines (he has huge mis-trust of the medical establishment anyway), but rather needs to have a calm, relatable set of stories that illustrate how things might unfold. I love the description of 'rocks down a well' that foxfirefey cited, but this kind of language would repel my dad.
I'll have a dig into the helpful links to The Five Wishes, the Advanced Care Planning website, and the POLST link. I think my question is more about the ethics of seeking consent, and ways to provide informed consent.
posted by amusebuche at 1:49 PM on May 15, 2019
Griphus, it is exactly these scenarios that I am grasping for. Informed consent is a slippery thing. I don't think my dad will be persuaded by alarming headlines (he has huge mis-trust of the medical establishment anyway), but rather needs to have a calm, relatable set of stories that illustrate how things might unfold. I love the description of 'rocks down a well' that foxfirefey cited, but this kind of language would repel my dad.
I'll have a dig into the helpful links to The Five Wishes, the Advanced Care Planning website, and the POLST link. I think my question is more about the ethics of seeking consent, and ways to provide informed consent.
posted by amusebuche at 1:49 PM on May 15, 2019
Response by poster: Just checking back in to update. My dad did end up signing the DNR. We had another nurse come who was able to get to the two issues that concerned him most. First, she explained that the DNR would only come into play if his heart had already stopped, ie, he was already dead. It wouldn't mean that if his heart was still beating no one would help him. Part of his worry was that it meant that he was declining any kind of emergency care. Secondly, she addressed the religious concerns along the lines of "I believe that when the lord is ready to take me, he will, DNR or no." That seemed to reassure him.
Now I just wish there was a more humane and dignified way to provide notice of the DNR that doesn't require having it stuck to the front of his fridge, where he has to look at it a dozen times a day.
posted by amusebuche at 9:59 AM on May 31, 2019 [2 favorites]
Now I just wish there was a more humane and dignified way to provide notice of the DNR that doesn't require having it stuck to the front of his fridge, where he has to look at it a dozen times a day.
posted by amusebuche at 9:59 AM on May 31, 2019 [2 favorites]
This thread is closed to new comments.
posted by freshwater at 1:00 PM on May 14, 2019 [2 favorites]