I agree @Nrdsb4 It is important to be very specific with what measures you want to be performed . DNR is different from a Living Will. DNR only means that life saving measures will not be initiated once respirations and/or heart stop. DNR does not mean do not treat as some may think it does. That’s why it’s important to have both documents . I also agree that it is very important to choose someone who can follow your wishes, because any of the documents can be rescinded at any time by the medical POA . I am so sorry for your loss.
This is such a personal issue, there really are no right answers. My MIL has severe dementia, she basically stopped having much in the way of cognitive function 10 years ago, yet she keeps on living in the facility she is in. My wife basically told them not to do anything extraordinary other than keep her comfortable and let nature take its course…it can be especially rough when it is a parent you don’t have a good relationship with, like with my mother in law.
I agree that quality of life depends on the person, and also our ideas of what is or isn’t quality can change. For me, it would be by mental facilities, I could take a lot of physical things, but if my mind truly starts going it would be difficult.
I think what upsets me is when people talk about these kind of things in black and white terms, because it takes out the very individual things we talk about. Those (who are very few IME) who think that these decisions should be outside the hands of people and their families seem to lose the empathy for those going through it, whole those on ethical/religious grounds who say life should be preserved no matter what seem to lack the same empathy IMO.
Those who advocate ‘keep life going no matter what’, seem to ignore the other costs, to the loved ones who have to watch or the person themselves go through something they don’t want to. Then, too, the cost of maintaining life is very, very expensive, a majority of health care costs come from the last couple of months of life (I think the last I heard was 70%, but def more than 50%). Among other things, how many people who need medical treatment could be treated with the money spent keeping people alive those couple of months? On the other hand, for those who advocate intervention, basically outsiders making those decisions, how about the feelings of those around the person who is dying? And will their decisions be based on deciding what is really hopeless, or their own ideas? If these decisions come down to a person or small group of people, how do you keep out bias making decisions (because of handicaps, the income level of the person who is dying, religious beliefs, whatever…)?
For me this comes down to issues that revolve around issues of ethics and morality that aren’t cut and dried, that is has to come down to personal choice and decisions, and I think those wanting to make the decisions for them, whichever way they view things, are wrong, because both ends leave out it seems to be compassion for the person suffering and those around them or the consequences of their advocacy.
I truly believe that many of these issues can be solved by people making their own decisions and documenting them in a legally binding document while they are still of sound mind to make those decisions. But it does not end there. It’s important for them to tell as many people in their family, preferably at one time, what their wishes are. This is not a pleasant or popular discussion, but it is very, very important. And lastly, choose the right POA that is going to be willing and able to carry out the instructions in the document.
Nrdsb4, I am so sorry for your loss.
My dad’s living will was very specific in that it stipulated no (and I mean no–no vent, no feeding tube, no antibiotics, etc.) life-prolonging procedures if he would not recover. He had a hemorrhagic stroke in the hospital when he was 91 and the doctors told me that much of his brain function was gone. I could see that he was trying to recover but I knew that the results would go against his wishes so once he couldn’t swallow, it was just a matter of waiting to the end.
I also knew that his reason for living was to care for my stepmother, who was physically well but pretty seriously demented. He knew that her son would put her in a facility and that she would die there, and that’s exactly what happened.
It was a very difficult week waiting for the end with him but as his proxy, I knew that was what he wanted. Since everything was written down, the hospital was good about it, and they found a bed for him so he received hospice care without needing to be moved. It would have been impossible for him to have hospice care in his home and I was glad to spare him the move to a nursing home or hospice facility.
This hospital was not my first (or second or third) choice but where EMS brought him when the aide caring for my stepmother called 911. I wonder what would have happened if he wound up at the big, first-rate teaching hospital where his doctors practiced. For sure they wouldn’t have been able to find him a bed to die in. I have reviewed the events of that last week over and over in my mind (a very chaotic week as it was during April of my only child’s senior year in high school!) and whether I did the right thing from beginning to end, but it was what it was. My stepmother lingered, totally confused, for another 6 months. When she asked for “Papa,” her son didn’t realize she was asking for my dad. But that’s what happened to them both, and I guess there are no guarantees for a “perfect death.”
Oh, and one more thing: when my dad was admitted to the hospital, the attending doctor assigned to him asked if he had a living will. I sent an email to the attorney who prepared his end-of-life documents and she emailed me a PDF of the living will and health care proxy immediately so I had it in hand when I went back to the hospital.
I was recently told, if a DNR is signed and available, that is a guideline, the patient can effectively change their mind by asking for help in the moment, so it’s not a be all, end all, but it is a good guideline for all to have available
@somemom A DNR is a legal document , not a guideline , but it can be revoked at any time by the patient or the healthcare POA.
These are complicated issues, and I think some of the quoted statistics probably don’t paint the accurate picture. Obviously there is often heavier medicare billing during the final year of life, but it may not be exactly what it is portrayed to be.
See question 7 regarding amounts spend during the decedents last year. (note that this is per capita).
http://kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/
And from that section:
I’m not interested in seeing money spent unnecessarily, but the actual picture isn’t necessarily what its sometimes portrayed to be.
Kaiser has lots of studies on medicare and other public health spending and I’m depressed each time I read one of them. Things will be changing before long. How, is the question.
My dad has been gone more than 10 years now. The one thing that shocked me was that I needed to produce that DNR at every step along the way. When he was in the hospital, I worked through the details of what to do/not to do. When he was released and readmitted to his assisted living facility and (after several weeks) fell and had to be readmitted but to a different hospital, I was shocked that the DNR did not transfer. In fact, the assisted living didn’t know about the DNR. I thought they knew. Well, that’s when I made sure I literally carried the darn thing with me everywhere I went. And made sure there were copies of this thing everywhere he was. I don’t know if the laws vary from state to state. And quite frankly don’t know if they’ve changed since the mid 2000s.
The other thing was I had 4 siblings to deal with (my mom passed many years ago). 2 of them were supportive of just about any decision I made. 1 sibling thought my dad couldn’t possibly be as bad off as he was. The other thought the place where lived must have caused his issues. Gotta love family dynamics.
And the conference call feature on my cell phone. I could call each of my siblings and tell everyone the same thing at the same time so that everyone could ask questions, hear the answers, and (generally) come away with the same information. I wasn’t going to play the ‘telephone’ game where one person says one thing and it gets repeated to the next person but with parts missing and so on and so on. If anyone asked me a question separately, I found out the answer and called everyone back with the answer. Again, gotta love family dynamics. But that was the best way for me with my sibs.
@Nrdsb4 - so sorry for your loss. I think your stepmom’s experience is a perfect example of how some things aren’t black and white. So when I hear people say, “I don’t want to be put on life support,” I wonder if they’ve indicated all the ways they would indeed welcome temporary life support if they knew it was temporary. Problem is, medicine is often an art as much as a science and health care professionals don’t always know whether someone will be able to come off of life support. This past winter, my 69-year old brother had a massive MI and his heart stopped on the way into the cath lab. He ended up on pretty much every kind of life support there was, and he was on it for over two weeks. There were many hours it was thought he would not pull through and all the odds were stacked against him, but he did, and I’m sure his family is grateful for all the interventions taken by the health care team (I am somewhat estranged from him - I’m not in their inner circle, so I don’t know details other than what one of my other brothers shared with me). So yes, it’s easy to complain about all the money spent on end-of-life care, but my brother’s experience shows it’s not always black and white and lots of variable feed into decisions, some that are impossible to predict until that moment when you are faced with that decision.
Another significant part of this issue is our society’s unwillingness to have these hard discussions with our family around death. One of the most obvious ways we (those who have worked in hospice) observe this is in the difficulty people just have with the language. People are hesitant to use the word die, dying and death. I can’t tell you the number of times on my Facebook wall (actually three times in the last week) that people have announced the death of a parent or pet, and did not use the word died. It’s because using other words (passed, gone, dying, not with us any longer) softens the event, as if an attempt is made to deny the harsh reality that none of us escapes dying. By continuing to avoid using the hard terms, we perpetuate the concept that talking about dying is taboo. I don’t just blame patients for this; there are plenty of health care professionals who are uncomfortable talking about dying, and if we want our society to move forward in initiating these difficult conversations, we need to get the language right.
I get, that these discussions are extremely difficult, about as difficult as any discussions we can have, but until we change our language, it will be just as difficult to face the reality that we don’t live forever and make some of these hard decisions.
@dadx:
Those are interesting statistics, and there is truth to that, one study I saw said that the 1% of people who died each year account for 10-12% of costs. However, other articles imply that part of the problem is that while the last months of life themselves have not become more expensive,that the problem is in the months and years leading up to the final months, that it has gotten expensive, if I read what it said correctly. So basically, for example, in the time leading up until the final months the costs have gone up, as doctors, rather than telling the patient what they know to be the truth, that their time has come and they should be making end of life decisions to make the end time as good as possible. People with multi organ failure, people with chronic conditions being kept alive a lot longer, all contribute to the costs, this citing mentions some numbers. http://www.nytimes.com/2013/01/11/opinion/costs-of-medical-care-at-the-end-of-life.html.
Again, it has to be an individual decision, but if someone has stage IV cancer and all the heroic medicines and such can prolong life by 6 months, basically attached to being in the hospital, is it worth it in terms of quality of life? These are tough decisions, but one of the things they have been saying for years now is that medicine has certainly extended our lifetimes, but that for many people those extended lifetimes are spent wedded to hospitals and care, that the quality of that extended life has not caught up to the length of it…and no, I am not suggesting a Logan’s Run kind of euthenasia or anything of the sort, but I think that doctors and medical providers need to be better at telling patients the truth about what the treatments can and can’t do for them, how long it can extend life and so forth, so better decisions are made about hospice care and about perhaps accepting that anything done at the current point would lead to being alive longer but perhaps not the way they would wish to live, and making what time is left as comfortable as possible. It has to be up to the person who is sick and their family, but I think having the right information is important, too.
@musicprnt Many times health professionals are very candid in prognosis, what to expect in terms of life expectancies , quality of life etc with the patient as well as family members . Often people are just not willing to accept the info that they are given. It also doesn’t help when well meaning friends and family members give anecdotal “proof” of miracles involving their family or a friend of a friend or so and sos Aunt Susy.
But this is what I was saying… we can do this, but people need to be aware that health care can be an art as much as a science. I can’t tell you how many times in my eight years working in hospice, we admitted patients with dementia to our service, only to have them stabilize then kicked off of hospice services (same could be said with a few other diseases). What happens is there’s a medical crisis with a patient, patient or family decides not to pursue the aggressive treatment and put the patient on hospice, but somehow they stabilize and the hospice staff cannot re-certify them at the end of their certification period when they can no longer document a decline, and they are taken off of hospice services.
As an example (I saw this a number of times) - person comes onto hospice (which means, some physician has certified that, given the normal trajectory of their disease, they will die within six months) with dementia. Yet, two years later (I’ve seen three), they are still alive. What typically happens in these situations is that the patient is now being overseen by a health care team on a regular basis (1-3 visits per week) and steps are put in place that allow that persons to stabilize (as opposed to decline) at some point, and the team can’t ethically (and legally) re-certify them based on a decline, because they are not declining. Maybe it’s because the person is now getting appropriate pain and anxiety medication, so their appetite increases, they’re sleeping better because of decreased pain, so their energy increases. Because their pain and anxiety are better managed, they become a bit more participatory in social life. All these add up to a reality that the person is going to live a lot longer than six months - all this without involving ‘life support’. These kinds of examples are, I think, mostly responsible for why there is a big move these days to also utilize palliative services with some people as opposed to hospice services. It is up to a person’s physician, in consultation with a palliative care or hospice agency, to determine whether they are appropriate for palliative care or hospice care. Lots and lots and lots of gray in the area of end-of-life management. Throw in a loved one who is VERY vocal, demanding, and unwilling to listen to wisdom from health care providers, and you’ve got someone who is steering their loved one’s health care wishes, maybe against what is in a living will.
I’ve thrown out a number of scenarios here to illustrate the unending number of variables that can play in making these decisions and you can see how unrealistic it can be to make such pronouncements (no heroic measures taken) in times of stress. Yes, in some cases, it’s obvious, but walk through any skilled nursing care facility and you’d be amaze at how many more people are slowly dying of dementia as opposed to people who may or may not be in a facility who are clear-cut end-of-life cases (i.e., stage-4 cancer with multiple organ failure, ALS, brain-death such as Jahi MacMath). I just can’t emphasize how many variables there can be, intertwined with the personalities of any given health care provider and patient or loved one making decisions. It’s just not always so neat and clean.
@carolinamom2boys:
I don’t doubt that, but I was reading an article written by a doctor who was from Scotland, had practiced in Canada and now practices in the US, and he said that he found candor was lacking when it came down to the decisions patients needed to make. On the other hand, I also realize that people grasp at straws (and how can I fault them, these are people they love) and the internet certainly hasn’t helped, with all kinds of crazy crap out there on how you can perform miracles. There is some irony to all this, we have a system where people may be prolonging life when they might not have to, and in general we often prevent people who want to be in control of how they die and when from doing so.
teriwtt, that removal from hospice is exactly what just happened with my Mom. Last (2015) Aug she was in the hospital being unresponsive and they said, get here quick. She responded when my brother and I arrived and was back in AL. but I was able to put her on hospice so there wouldn’t be more hospital trips. Now she is better and just got off hospice.
I am sure I have whined all along, but for new readers, here is something of my Mom’s journey.
Started in 2014
Dementia, lived alone at least one year too long, financial abuse by handyman. She convinced herself and some Dr to do knee replacement surgery, and while at skilled nursing/rehab, it became really obvious she wasn’t going home alone. Tricked her into the independent side of the AL place saying she would go home when her leg was better… and got her outside aide to monitor her pills. Moved her to assisted side, where there was more watching and a med aide for pills. She was there almost two full years. Fell and broke her arm badly, but it healed. Several UIT’s that I diagnosed on the phone with her, and called the nurse to check. A few runs to the hospital with “heart troubles”. (I think they were anxiety attacks). She had a UTI at her birthday last (2015) July and was about unable to speak and had lost a lot of weight. All the grandkids came for the party and left thinking she’d be gone in weeks.
I hired extra caregivers on top of the AL place to make sure she went to meals and ate and in Feb this year I moved her to the Memory Care associated with where she lived. As I said, got hospice just before that move. THIS July she has gained weight, can almost follow a conversation and isn’t having as MUCH trouble finding words as she did last six months. I think the Memory Care has made a huge difference.
However, there are days I feel badly for her that year ago Aug when they said she was going to die and she was not on any meds, but they also said they could stop the IV/water. We didn’t go for that and we offered her drinks when she responded. If we had just stopped the IV and water, she wouldn’t have had this last year. This last year she fell 5 or six times, once badly enough for a concussion and five staples in her head. Didn’t break anything though. Fell hit her head another time and half her face was black and blue. Is now incontinent all the time and in a wheel chair. Has “snippy little girls” telling her what to wear and ruining her clothes in the laundry. Has days she forgets how to walk, talk, and swallow (they sweep her mouth because she chews, but doesn’t swallow. Then they give her an Ensure to sip in a straw, that usually is swallowed. But she has days like yesterday when she could say that the crazy lady at the end of the table was making noise again. She has seen pictures of her new great grandson (although never the real thing) and she doesn’t know who the picture is anymore. I’ve discussed with my DH and my BFF that honestly I would have left the IV off knowing the outcome, but it is hard. And I don’t think my brother was there, then.
Now I think he is there as he hasn’t been to see her since IDK when, before Mother’s Day (didn’t see her) and didn’t see her for her birthday. He lives just as far away as I do, although I’m retired and he isn’t so it IS a lot easier for me to get there. I still think he should have gone in May or July.
(((((Hugs))))), esobay. It’s so hard.
For anyone interested in the bioethical and legal issues of the end of life decisions, take a look at the Medical Futility Blog.
@twistedjoker If that man was healthy and happy, probably not. But if he was riddled with cancer (or another terminal illness), in a great deal of pain, mental and/or physical, then he may take that step. I wouldn’t call that insane, only tragic because a life would be lost, but definitely understandable in some situations. People commit suicide all the time, sadly. After watching my grandmother die slowly and in agony, I can understand the desire to end it faster if no progress was expected. In those situations it is a viable option as long as the freedom to make the decision lies with the individual and his/her family. Allowing any doctor to make that decision alone would be where I draw the line.
It is difficult to really KNOW what another is going thru, especially folks living with various progressive chronic disease. Some have constant, unrelenting pain, some are always short of breath, some have progressively been trapped in their bodies, and the list goes on.
I am saddened that many people I’ve come to know over the past decade have died–many with multiple chronic conditions that caused multiple exhausting hospitalizations. In the end, many were pretty exhausted and tired of fighting for life and breath.
When I’m exhausted and too tired to fight for breath in the future, I’d like to die peacefully and with dignity at home instead of painfully being hooked to machines which just get in the way.