Statement by the Office of George H. W. Bush on the health of former First Lady Barbara Bush. pic.twitter.com/4csUS6IRKZ
— Jim McGrath (@jgm41) April 15, 2018
The former first lady is choosing hospice care at the end of her life. She has multiple chronic conditions and after her last hospitalization, she evidently said enough. She made the affirmative choice to forego future curative care and is now receiving hospice care which is comfort and symptom alleviation care.
Hospice care is increasingly common for individuals on Medicare. End of life is the single universal public health experience as no one will ever be immortal. So people need to be prepared.
That means thinking through what you want in a given scenario. Do you want everything that can be done? Do you accept that “success” might mean never being able to walk again? Do you want care up to a certain point and then comfort? Are these decisions different for different scenarios?
This means talking through your mortality with the people that are important to you as well as those who are in the position to make decisions for you if you are unable to communicate your wishes. This means your spouse, kids, attorney, power of attorney holders, clergy, primary care and frequently seen specialty doctors and anyone else that you think will be relevant.
And once you have made your decisions, document them. Generate or update a living will, have a MOLST or POLST . Make sure your authorized decision makers have the updated copies of your wishes.
And as life continues to happen, think about what you want and as your opinions change, update your wishes.
Sarah in Kingston
I’m going through this right now with my father. They’re difficult conversations to have, but necessary.
raven
Until our friend died of brain cancer a couple of years ago I didn’t realize hospice wasn’t necessarily “end of life” care.
Alain the site fixer
Thanks David, this is quite timely as I’m drafting these docs this week and I’ve not given this end of things enough consideration.
mart
The Death Panel’s have decried that Mrs. Bush shall die. The bastards.
holaitsmonica
Thanks for posting this David, I have been a social worker and am now a grief counselor for hospice and these are very important conversations to have. Many people are afraid to talk about death, it is frowned upon in our culture but it is a part of life. It is so important to make your desires known.
Baud
I need to do this.
raven
@Baud: We finally did it a couple of years ago and then the dude said “you’ll want to do this again in a couple of years”!!!
Big Ole Hound
The big problem with these decisions is use of a breathing tube. The wife and I have specified that after 48 hours it shall be removed so there is no decision the hospital or doctors feel unable to make. Once the breathing tube is removed it becomes comfort care only and DNR.
Baud
@raven: Maybe I’ll wait until just before I die then.
Big Ole Hound
@raven: Most insurance companies will not pay for hospice care unless death is 6 months or less away.
Tokyokie
What people often fail to grasp is that “extraordinary measures” in most cases will only bring a patient back to the condition he/she was in immediately before the measures were applied. And I don’t know of anybody acting as a guardian for the hospitalized patient who has witnessed a code blue who hasn’t changed the patient’s status from “full code” to “DNR.”
kd bart
Just signed my Advance Health Directive last week.
Tokyokie
@Big Ole Hound: In most cases, a certification by an attending physician that the patient has 6 months or less to live is a precondition for being placed on hospice care. In the event that the physician was wrong and the patient is still alive 6 months later, the status can be renewed.
Baud
@Tokyokie: It’s like your own personal Friedman Unit.
raven
@Big Ole Hound: How do they know?
raven
@Tokyokie: Ah, tanks.
Tokyokie
@Baud: Yes, but with fewer explosions.
satby
It’s something that has been discussed fairly openly in my family, but Irish (and Irish-American) culture is a bit more realistic about end of life coming to us all. I thought everyone was that way until I was an adult. I knew not only what my parents wanted, but my aunts, uncles, and grandparents. My kids have a very clear idea of my wishes, though I need to get on writing down formal directives.
I have nothing but sympathy for people who have to push through extreme discomfort to do this. But watching the family battles and dysfunction at a major trauma center during one of my jobs over EOL care /discontinuing care was heartbreaking. Without clear written directives, small Terri Schiavo type battles rage every day in hospitals between family members. Spare yourself and your family that.
BC in Illinois
I was involved in these discussions with my mother, then a few years back Mrs. BC and I wrote up ours. In my earlier life as a Lutheran minister I was around while people made end-of-life declarations — usually on the model of “don’t do stuff if it isn’t actually going to help; let it happen.” It’s good to make the decisions and then let the rest of the family know.
The people who REALLY need to make their wishes clear are those whose families are going to split over these things. “G’pa said this.” “But I’m not comfortable with that.” Or even, “I know G’pa said this, but we aren’t at that point yet.” Grandpa needs to make it clear who has the final decision — and the decisions are not always easy; what is perfectly clear in May may not be so clear in April — and needs to (as much as possible) in advance, give that person his total support in how they implement that decision.
It’s great when the whole family is on one page. It’s terrible when they’re not.
The person at the center needs to spell out what page people should read from.
ETA: Or, what Satby said, #18.
satby
@Tokyokie:
My father changed his own status to DNR after he coded and they revived him as he was dying of cancer. He was only 54, and the bias for younger patient without a directive is to do everything possible. But he never wanted to go through that again and made it clear to everyone, including the janitor I think.
satby
@BC in Illinois:
This is what I was trying to say. Every family psychodrama that ever happened before will play out again at end of life. I’ve seen brain dead people kept alive for days and weeks (one for years) because one single family member couldn’t accept that it was time to say goodbye. Horrible.
Sab
This is so important.
My mother had a DNR posted on her refrigerator door. My father never documented anything, and now he has dementia so it’s too late.
I have medical power of attorney, and any decision I make will anger at least one of my siblings.
Gelfling545
Also, if you did this years ago as I did after dealing with my Mom’s prolonged illness, remember to update it. My proxy was my sister as my kids were still rather young then. Now they’re old enough to deal with it & my sister has her own health issues so it was time for an update.
HeleninEire
@satby:
One of the best hospices in the world is Marymount in Cork.
Barbara
It’s hard to know what to wish for when it comes to dying. My admittedly limited experience is that when everyone recognizes that a person is dying, it becomes much easier to transition to whatever end of life care is most appropriate. Trying to anticipate what the attendant circumstances will be when that time comes and write legal documents to cover the possibilities of those scenarios is very difficult. Will you be mentally competent or will you be able to communicate more specific wishes when that occurs? My mother died very suddenly earlier this year. She died from the effects of gastrointestinal bleeding caused by blood thinners she took for DVT. I tell my children that none of us is ever going to have to remember my mother when she no longer recognized us or was unable to enjoy music or reading. Still, I would not want to die like that.
Tokyokie
@satby: As a nursing student a few years ago, I participated in a code performed on a woman in her late 80s, early 90s, who had terminal cancer with metastases in several locations whose weight had dropped to about 80 pounds. We did CPR on her for a long time, breaking several ribs in the process, and some family members were there for the end of it. We kept her alive, albeit with severely diminished cardiac function, an endotracheal tube and ventilator, and total parenteral nutrition (she was too frail for insertion of a PEG tube), but when she flatlined again a couple of days later, her family let her go.
Anonymous At Work
My grandmother went to hospice and my grandfather refused further treatment at the end of their lives. The hospice care that my grandmother received was an eye-opener for various members of my family. My father had long before known and had been planning end of life care. He had purposefully been desensitizing his own children to pulling the plug and/or sending us to a good nursing home rather than struggle as had his siblings “when it was time”.
He also stipulated that giving him “good beer” as a last request was permissible but using “lite beer” would get us kicked out of the inheritance. I am not kidding.
Just One More Canuck
David, I always appreciate the kindness and thoughtfulness of your posts
satby
@Tokyokie: yeah, the real thing is quite different from the sanitized version they show on TV (isn’t everything?).
A real resuscitation can be brutally rough, especially on an old person, for very little extra life time for an already terminal patient.
satby
@Barbara: Condolences on the passing of your mother Barbara. Sudden death is so hard on the family.
rikyrah
My father died long before my mother did.
From that moment, and anytime my mother would find out someone was in the hospital, she made her wishes clear. We all knew what she wanted.
But, thanks for this, Mayhew.
rikyrah
@Alain the site fixer:
Hope that you are ok, Alain.
Frank McCormick
But, but, but DEATH PANELS!!!!!
For those who don’t (or care not to) remember, during the debate on the ACA end-of-life planning was transformed by Republicans into DEATH PANELS to kill your grandma. Nice to see an ultimate Republican take advantage of this necessary fact of life.
Barbara
@satby: Thank you. It has been disorienting.
MomSense
I have medical power of attorney for two people currently and need to figure it out for myself. Most hospitals have resources and forms that help with this process. The hard part is deciding to have the conversation.
Spanky
By happenstance, today is the anniversary of my father’s death 18 years ago. And although it was after a two-week hospital stay following a sudden fall, he had already made the DNR. legal and financial POAs, and even a pre-paid funeral/cremation.
In the end his leaving was similar to Barbara’s mother, so there were choices that would have had to been made had he not pre-made them. We are so grateful for that.
(BTW, “Mayhew”, that was in NC)
Nicole
Thanks for this post, David. My husband and I drew up ours a few years back, but it’s a good reminder to update it should we be fortunate enough to live to live to be elderly. Both of us lost our mothers fairly early (mine died at 35 and his died in her mid 50s) to illness. My mother was very clear with my dad that she wanted every measure taken to revive her if she flatlined (the doctors put a lot of pressure on my dad in the last few days of my mom’s life to do a DNR, but my mom was coherent to the end and her response was, “What? Of COURSE I want them to try to revive me!”), but in my husband’s mom’s case, it was early onset dementia, so no one knows what she wanted.
I also totally get why my mother was so forceful about it; she had been given permission to be released from the hospital to die at home and I think was hoping to hold on long enough to do that, but died two days too soon. Today, they would have sent her home sooner, I think, but this was cancer treatment in the early 1980s. My aunt’s end-of-life journey, 25 years later, was much different, and much better.
Barbara
@satby: Even when the person at the center of the drama has been clear it is often the case that children who have moved further away and not been involved in daily care do not accept that decision nearly as readily. Partly this is because they don’t see the day to day deterioration, and no doubt, partly because of guilt and a belated realization that they should have been doing more. The result is that they can try to swoop in to “make sure everything possible is done!” If you are in a situation where this might happen (and if your out of town relative is in the health care field you can multiply the likelihood by at least a factor of three), it is important to communicate with those people in particularly blunt terms before the final decision has to be made.
Gin & Tonic
@Anonymous At Work:
An eminently sensible and rational request.
raven
@Gin & Tonic: How’s the weather?
raven
@raven: Ugh,I just hit the NBC Sports App, miserable!!!
ohthatguy
I imagine Barbara Bush is making sure everything is done properly, as we’ve seen her kids make federal cases out of this type of thing before. No one should have to go through that
PhoenixRising
@Barbara: I’ll add only what I have time to type at this time, but more will be revealed to BJ jackals soon: My mom died 3 weeks ago and today is my first day back at work.
Barbara’s point is critical for your siblings/children’s relationships after your parent/you die.
Even when the person at the center of the drama has been clear it is often the case that children who have moved further away and not been involved in daily care do not accept that decision
My mom had pancreatic cancer. She got about 29 really good months, with scans that showed no life-threatening recurrence. However, this cancer is wily, and when the recurrence came it fooled the daughter who lives nearby and is a health care provider, the patient, the oncology team at a world famous teaching hospital and Mom’s palliative care doctor. No one expected the symptoms of autoimmune encephalitis; no one predicted the seizure that ended her capacity to express herself.
Two of us who live far away were able to dash to the hospital, after our sister fought off many experts who wanted to ‘just do ___, at least’. However, a part of the subtext to the experts’ demands to treat against the patient’s MOLST was, When your sisters get here we are gonna be in big trouble because they haven’t seen how her disease has progressed. It wasn’t said aloud but afterward it became clear that this was lurking.*
The doctors didn’t know that our mom had had a one-on-one with each of us and a group meeting to discuss what might happen, and directed us personally while she could, to avoid the battering, traumatic “health care” that happens when trained professionals apply the trauma-rescue model to a dying, frail body.
We were lucky. The death rate is still 100%, despite all we can do to change what happens right before that, so start talking today.
Mom recommended the book ‘Being Mortal’ to everyone, including her oncology residents. If you don’t know why doctors often tattoo ‘DNR’ on their chests, pick it up at your library.
*Happily for us my sister, who was in practice my mom’s doctor during the last months of her life, also didn’t observe the changes as an acceleration of the cancer. Had any of us known, we would have done more, but we were looking for the end process that stops the hearts of 99.999% of pancreatic cancer patients. And that’s not what happened. I’ll put together a post on this because it’s an interesting topic: We refused the futile care, and the testing to determine the futile care’s efficacy in theory. But because we resisted, there is still not a case in the literature of a pancreatic cancer patient developing this outcome. As I managed not to say for the 48-hour battle with an institution whose bias is toward treatment: That woudl be wonderful data to have, but I only have one mother and she told me what to do in this situation!
WaterGirl
@Barbara: I’m sorry you are having to go through this.
I lived 3 hours away from my parents, and I saw them 3 or 4 times a year and talked on the phone once a week. When my dad died (my mom had died 10 years earlier) it was kind of surreal. The world around me looked the same day to day, but it was as if the foundation was gone.
Hugs, WaterGirl
raven
@PhoenixRising:
And the hospital as well.
The Moar You Know
At the point Babs is at (probably well before) I want a big fucking shot of morphine and let’s call it a day.
Which is in the trust and as an advanced medical directive as of two years ago. And I gotta tell that story because it was too weird for words.
Our trust attorney was a Jesus freak. Hardcore evangelical to the bone. Wanted to put all this religious shit in our trust. We said no – it was fine, but a bit questionable that he wanted to do it in the first place. And then we got to the end of life directive, which I thought was going to be the usual evangelical “fight it out to the end, go Terry Schiavo!”.
It wasn’t. At all. To paraphrase, it basically said “if I’m in agony or broken, sick, or have just had enough, the docs are to take any steps including those that will shorten my life or possibly lead to my death to keep me comfortable”. I was stunned.
Turns out his wife had died hard from cancer a few years back, and unlike most evangelicals, he actually learned something and wasn’t willing for a single one of his clients to go through what she had.
Get a good attorney and get those advance directives in place. I am in my fifties and reasonably healthy and hopefully won’t croak anytime soon, but some dickhead on the freeway could change lanes without looking and that could be the ballgame right there. Get it done.
Gin & Tonic
@raven: About as miserable as you can imagine. Low 40’s, strong wind from the east, expecting about an inch of rain by noon. Looking at the live feed, I see hats, gloves and a fair number of jackets or long-sleeved tops among the elite runners, both men and women.
raven
@Gin & Tonic: Yea, I just watched a group start and people were throwing gear off as they started.. Doesn’t look like it has “dampened” their spirits!
Nicole
@PhoenixRising: I’m so sorry. To quote musician John Wetton, who died of cancer last year, it is a merciless assassin. I’m glad you were able to have the conversation with your mom in time. And I look forward to reading what you have to say about your mom’s illness; it does sound like an interesting topic. I’m also going to check out “Being Mortal.”
WereBear
I have seen similar, and it has always baffled me that as long as the relative was technically “alive” they thought they didn’t have to confront loss and grief.
Nicole
@The Moar You Know:
I had to have my pet horse put down a few weeks ago because he could no longer stand up (he was elderly and had been declining for a while) and the vet explained that she was giving him an overdose of barbiturates and that it would make him feel “really good” right at the end (she told me there was a danger he might try to stand up again, because he’d be feeling that good and we needed to make sure he didn’t). I found it really comforting to know his last moments were completely free of pain, and, in fact, maybe a bit euphoric. It’s terrible we can’t offer the same gift to ourselves.
laura
In caring for and making decisions regarding care, or witholding care for my parents, every decision was based upon what would maximize joy or minimize suffering.
I hope that this may be of use to those in similar circumstances.
Barbara
@PhoenixRising: My father died of pancreatic cancer, but as is far more typical, after only four months. I am sorry for your loss. It’s just a vicious diagnosis.
Barbara
@WaterGirl: Thank you!
Gin & Tonic
@Barbara: My father was given 8 weeks when he was diagnosed. 8 weeks to the day, he died. But this was many years ago.
boatboy_srq
@Frank McCormick: And she can, because she’s white and wealthy, and because nobody would DARE gainsay Barbara Bush.
Not so very long ago a classmate lost her grandmother. Gram had her ADs and DNR all made out properly and logged and on file at the hospital. She had cardiac arrest and was rushed to ICU. IN THE ICU, having her SECOND cardiac arrest, and the attending physician is asking her son (my friend’s dad) whether he wants to override her DNR. Wut. Da. Fuq.
If at all possible make sure your ADs are thoroughly completed and explicit about how and when they should be applied. You never know when some overeager MD will try to second-guess.
grubert
This topic is sensitive and requires a fair degree of empathy. ( I’ve had parents and family in these circumstances too )
But there are few people less likely to evoke empathy in me then Barbara Bush.
JeanneT
I want to be able to exit this life before I become helpless. Even legal euthanasia for patients with terminal illnesses is not sufficient. People with chronic debilitating conditions should also have the right to exit with grace at the time they choose. I’ve seen/cared for four people through their final years of cancer, Parkinson’s and Alzheimers: it was brutal, even with hospice care, as the end neared. My dad kept saying “I’m worried about living like this for years and years.” But there was no legal way to let him die easily, except to let him die without curative treatment during a bout of pneumonia….
I don’t intend to live the last years of my life like that. I’ve told my children, but I don’t believe there’s any way to state that in an advanced directive that would be legally binding on medical providers. So I guess I need to study up on my self-administered options for euthanasia and actively plan to take my own life before any of those types of diseases rob me of my ability to do so. And yup, have a good DNR directive written up ASAP, in case of accident, stroke, heart attack.
FDRLincoln
My mother-in-law died last Tuesday after a year-long battle with lymphatic cancer. It was brutal towards the end. She was 80 years old and in poor health anyway, but she demanded chemotherapy.
It made the last weeks of her life even more miserable than they would have been, but it was what she wanted. Friday before last, she finally accepted that the chemo was not going to work and she accepted pallative care only, which improved the quality of her last few days.
The chemo was awful. Both my wife and I have made it very clear to each other, all of our friends and relatives, and in our legal paperwork that we will not go through something similar.
Ella in New Mexico
In my state we have less restrictive legal rules regarding who can speak for you should you become incapacitated. Essentially you start with a spouse or significant other, then move down through the family tree of blood relatives. fIt does make things a whole lot easier than I’ve heard other places in the country have to make decisions for these patients.
Hardly any of my ICU patients have advanced directives. We try to get a sense of what they want at admission if possible, but pretty much it’s always “Full Code unless I can’t be saved” which means nothing. I’m not really allowed to say that even though I can make your 82 year-old heart restart 4 or 5 times and keep you on 4 blood pressure medications and a ventilator for days after you had a massive brain ischemia from which you will never wake up, your family will be stuck with the task of standing watch at your bedside literally watching your toes and fingers fall off from poor perfusion while they make the agonizing decision to end your life. It would lower our patient satisfaction scores.
I can say from my experiences in the intensive care unit that short of an advanced directive, every single person needs at the very least, one or two other human beings who know exactly what they want to have happen should they become irreversibly ill with no reasonable chance of recovery. And while it doesn’t always mean having to be placed on a ventilator to support a recovery from an illness is “no reasonable chance”, it usually means “Even if they wake up they’re never gonna have any meaningful quality of life”.
Talk to the people you care about, folks.
Elizabelle
@PhoenixRising: My condolences. Would look forward to what you have to say, in time. Losing a parent is hard.
@Nicole: I agree. Dignity and freedom from extreme pain, if one has made the decision clear and is prepared.
Barbara
@Gin & Tonic: It hasn’t really changed. It’s just a matter of luck whether you survive longer. One colleague, like my dad, died within four months. Another lived for nearly three years, mostly because he happened to have early symptoms or the tumor was located in a part of the pancreas where it didn’t so easily metastasize, which is why it almost always recurs even after invasive surgery — the pancreas sits at the crossroads of several major organs.
Ruckus
I had to make the hospice call for my father as he had asked me to be the decision maker if he couldn’t and Alzheimers renders you unable to make even the simplest decision at the end. I didn’t find it to be that difficult a decision to make, he had been suffering for 20 yrs with this disease and the last 10 yrs were at best a living hell and at the end various organs start shutting down one by one until it cascades into death. To not put him into hospice would have been cruel.
My sister had cancer. She went through 2 lengthly runs of chemo but in the end they didn’t work. The decision was exploratory surgery to see if they could find the cancer. They took one look, sewed her back together and told her there are two options. Heavy chemo and she will live 2-4 months. Or hospice. She chose hospice. The number of people who argued that she should hang on as long as possible and that she had no right to make the choice of hospice on her own was amazing. This was her life, and her decision, not her mom’s, not her son’s, not her siblings. If she was not of sound mind she couldn’t have made it but the number of people arguing that just making it meant that she wasn’t of sound mind…….. Life is final, most of the time we don’t get to make any decision on how to go, it just ends. But if you have that choice it is yours and yours alone. It is difficult to figure that out when you have time left and it is difficult to figure out when you have a serious illness what you want but it is your decision. Make it while you can, hopefully you will know someone who will if necessary, insure that your wishes are followed.
Ruckus
@Ella in New Mexico:
I have to say that CA has some pretty good rules. Not as good as I might like but not bad. But one still needs advocates for sure even with all the laws. Some docs seem to think that do no harm means do what ever is necessary to keep the barest attachment to life going no matter what the patient or their advocate wants and will argue. But my experience is not that here. Everyone I’ve had to discuss end of life with makes it perfectly clear that the choice is the patients or their chosen advocate. But when that person has made no decision docs of course have legally no decision other than do whatever is medically available. Do no harm. Death is not always the most harmful decision. It just isn’t. Sorry if that idea insults, but living with an incurable disease or incident that destroys living and always ends in death is not life when in the last stages. Some people live 9-10 decades, most don’t. Some make 6 months. It’s a crap shoot but it always ends one way, always.
No One of Consequence
@grubert: My thoughts as well. I wish no pain or suffering on anyone, but to paraphrase someone’s comments on when Scalia died,
“If she wanted more respect and compassion in death, she should have shown it to more people in life.”
May she consider her own callousness towards the victims of Katrina. That is the only image I see when the name “Barbara Bush” is raised.
I am sure that she is not nearly so one-dimensional, but the sheer disregard she showed to her fellow Americans during tragedy told me volumes about her character.
Peace,
– NOoC
Sab
I know this is a dead thread, but it has been more personally useful to me than anything I have read in years.
Thank you Richard David Mayhew Anderson and all the commenters.
Beezus
Read BEING MORTAL by Atul Gwande. I cannot recommend this highly enough. It really explores end of life issues and how we all respond differently and what works for some is not what someone else may want (or need). But, no matter our stance or choices, we MUST HAVE THESE TALKS. If you do not make known what you want, when it becomes too late you are stuck. I hope I am a good 25 years+ from this end-of-life scenario – but, we never know. Living alone I have prepped a simple Living Will and LWT and have made it ABUNDANTLY CLEAR all my thoughts on DNR, organ donation, etc. It is the best legacy we can leave, taking care of these details. Choices are important.
JustRuss
@JeanneT: This. I’ve spent 5 years watching my mother slide into dementia and helplessness, no way in hell do I want to go through that.
Sab
@JustRuss: Same slide with my dad.