End Of Life Issues---The Good, The Bad, and the Ugly
If I ever become a hospice nurse (which is what I've decided I want to be when I grow up), the varied experiences I'm collecting in long-term care should stand me in good stead.
Right now I have three different residents in three different stages in the process of casting off the human shell that has housed their souls for over eight decades. One of them, Allie*, had been in fairly good shape until the night she had a massive GI bleed and was going into shock while I wrangled with the 911 dispatcher ("She's HOW old? What's her advanced directive say?"). After the EMTs saw for themselves that I wasn't exaggerating---why do they assume we LTC nurses know nothing?---they scooped and ran, and after a few days in the hospital she was returned to us with a DNR order and an inoperable, fast-growing mass in her lower colon that could rebleed at any time. Her family, however, was unwilling to give up, and it wasn't until this past week, when she had a stroke that destroyed her ability to speak and paralyzed half her body, that they finally began to understand that whatever quality of life she had was gone.
While they have declined our suggestion to bring in hospice, they agreed to comfort measures such as liquid morphine and stopping unnecessary medications, and they've been coming in every few hours to do mouth care and lotioning. Allie is still with us, and though it's clear to all that she won't be much longer, at least she's surrounded by acceptance and can die in peace.
Not so, I'm sorry to say, with another of our ladies, whom I've known since the night she arrived at my assisted living facility four years ago, utterly exhausted from a day of flying across the country with her cat and two suitcases filled to bursting with expensive clothing, hats, and jewelry. Maryann* later followed me to the nursing home, where she has declined slowly but steadily over the past year; now her kidneys are just about gone and her once-sharp sense of humor right along with them. She's been in and out of the hospital now for several months, and each time she returns it's with a diagnosis of "dehydration" and we are once again urged to push fluids, push fluids, push fluids.
Well, guess what? Maryann doesn't LIKE to drink fluids. They make her go to the bathroom too often. She also doesn't like to take her meds---too many pills, she says. She's tired of taking pills. She's tired of living. She wants to stop taking all those pills so that she can be with her husband and her cat again. I don't blame her.
But Maryann's son, who brought her out here from Philadelphia after his father's death, is having none of it. There is a grandson's wedding coming up in June, he tells us, and "if Mom were in her right mind" she'd want to be around for the event. So we are to encourage/force her to drink at least 2 liters of fluids per day, take all of the 20+ medications she's on PLUS the new ones that were prescribed after her most recent hospital stay. "If she wants to 'go' after the wedding, she can," says the son, "but she really WOULD want to stick around for this. We can't let her die yet, so whatever it takes to keep her going, just do it." All this despite an advanced directive that says no resuscitation, no feeding tubes, not even antibiotics except for "comfort".
I want to tell him that this is the most inhumane thing I've ever heard of, that his ideas are so wrong on so many levels that I can't even wrap my mind around it, but I can't. Why? Because this ISN'T the worst thing I've ever seen happen to a resident with a controlling family. That distinction is reserved for the 95-year-old gentleman down the hall whose fate is in the hands of a late-middle-aged couple, neither of whom is related to him by blood. This unfortunate fellow has outlived all but one of his children, who is estranged for unknown reasons; and if he were in his right mind, I think he would be madder than a wet cat at having to live like this. "Grampa" is as demented as they come; his speech is unintelligible, he is combative at times and incontinent ALL the time, he's missing half his right foot due to infection and doesn't know he can't stand up without falling. He has ischemic colitis, CHF, chronic renal failure with a GFR of about 8, degenerative joint disease, osteoporosis.........yet this couple just can't seem to let nature take its course.
We've sent Grampa to the ER no fewer than five times this year, despite the belief of facility staff that we are flogging his failing body for absolutely NO useful purpose. I've sent him out for diarrhea that wouldn't stop. I've sent him out for pneumonia. I've sent him out for low BPs, twice. And yesterday I had to send him yet again, this time because he was obtunded AND his BP was in the toilet AND the diarrhea was back. Why? His POA demanded it, despite the fact that he has a DNR order and the paramedics give us hell every time we call about this man. Yes, we all know that "do not resuscitate" doesn't mean "do not treat", but every time he's sent out he winds up being admitted to the hospital for several days on the insistence of the POA. While he's there, he's tied down and force-fed medicines and IV fluids to rehydrate his body; when he returns to us he goes back to swatting at the hands holding a cup or a spoon to his lips. Doesn't anyone understand what he's trying to tell us?
I won't even go into the reasons why this is a waste of limited healthcare resources or how selfish it seems to me for families not to let their loved ones go when they fall into hopeless circumstances and life becomes a burden. No, what keeps me awake at night sometimes is the conflict between my job and my ethics, which holds that forcing people to stay alive is as morally wrong as killing them outright via euthanasia.
It's not that I would ever impose my personal beliefs on a resident or family, but as a nurse I've seen some of the worst sorts of suffering there is......and not all of it is physical in origin. Some of it is the loss of who the individual was; another large part of it is the loss of independence and dignity. But when those things are combined with medical problems that cause one to feel miserable every day of his or her life, well......would YOU want to live like that? I know I wouldn't. But even though I have an advanced directive (and have threatened my family that I would haunt them forever if they don't let me die when it's my time!), I'm less than confident that my future caregivers will know when to say "we've done enough".
They used to call pneumonia the "old man's friend" back in the days before antibiotics. While I wouldn't trade today's technology for yesterday's more realistic approach to end-of-life issues, I wonder sometimes if we as a society have become so arrogant that we keep people alive long past their natural lifespans merely because we can.
Just a few thoughts on an evening when I have more quiet time than usual to contemplate. If you've read this far, thanks for hanging in there this long. What are your thoughts?
*Names have been changed to protect privacy.
About VivaLasViejas, ASN, RN Guide
Joined: Sep '02; Posts: 26,648; Likes: 43,164
RN and blogger extraordinaire; from OR , US
Specialty: 20 year(s) of experience in LTC, assisted living, geriatrics, psychApr 24, '10What would happen if we made the POA spend 24hours with the patient before being eligible to make any decisions related to health care? If someone hasn't been physically with the patient they shouldn't have any weight in what happens.Apr 24, '10Ditto SuesquatchRN. Doesn't sound the elder centered care,but unfortunately, these unrealistic,medically modeled beliefs have been reinforced by MDs to pts. and families for so long, that it's a long LONG push to turn this whole geriatric ship around. For some positive reinforcement, have you checked out the EDEN ALTERNATIVE? My facility has been certified for 5 yrs., and while the whole thing is an ongoing process, it starts c the elder in the center of care, and radiates outward,involving care providers,family, MD,and on up to the Board of the hospital.If the PERSON in the bed doesn't WANT IT(fluids, meds,PT, supper, whatever) and we've tried our darndest to give them the CARE they deserve,they reserve the right of refusal. We document DOCUMENT document the circumstances,notify appropriate parties,and move on. It's their life.Keep your chin up-we do sacred work.Apr 24, '10Quote from SuesquatchRNI know.......~sigh~Preaching to the choir, Viva.
Society has been talking about these things ad nauseam for years, but our culture is still stuck in the grip of an insane death phobia that won't change until medical professionals really start educating the public as to the limits of what we can---and should---do to prolong life.
I'm old enough to have had a grandmother who was a nurse during WWI, and she was literally a window onto a world that existed long before antibiotics and defibrillators were invented. Of course, that was in the days when people generally understood that death was part of life, and that there would be times when they could feel it nipping at their heels. Our grandparents and great-grandparents knew what it was to bear six children and raise four. They married young and were widowed by war or disease......sometimes more than once. For them, death wasn't something that stood at the end of life, it was all through it, and by and large they accepted that.
My generation, OTOH, has always seemed to think of itself as immortal, and not only are we personally never going to grow old and die, we'll see to it that no one we love does either. Maybe so many of us are afraid to let go because that means we're next; maybe we cling to our forbears so fiercely simply because they are our last connection with the younger selves that we will never be again.
Anyway, that's a lot of generalization, but it sort of makes my point.Apr 25, '10Thankyou for your blog it was beautiful. I know Nursing is the direction I want to take in my life, I am a first semester student.Apr 25, '10Amen!
I work LTC and I, too, cringe at the things we are supposed to do to these poor souls who want nothing more than to be set free.
I am of the thinking, that just because we CAN make people live longer and longer doesn't mean we SHOULD! I see no benefit of living to see 99 if my mind and body are just a shell that houses my being, with no quality of life, I'd rather be in the better place.
I promise you, if my family EVER did to me what I see some families do to those they love, (tube feeds, full codes, treat at all costs, force feed meds/food etc) I will come back from the afterlife with a vengance and haunt them to the very end.
The hospice nurses who come to my facility are always trying to get me to go work hospice for their company, I have the "knack" they say. Hospice has always been an area i'd love to try.Apr 26, '10Great blog - lots of important questions Marla.
And yes, I encourage you to look at hospice . . . . it is too bad one of the families isn't ready for hospice yet.
One of the things I've found is that people has a false idea about what hospice actually is.
We (hospice) need to do more education.
stephApr 26, '10When I left work this morning my 94-year old uroseptic/respiratory failure patient looked like this:
PEEP of 10
just about every square inch of skin surface was weeping copiously
distal extremities cool & dusky from the pressors
HR in 120s
BP with those pressors 100/40
skin breakdown around her mouth despite repositioning the ETT up to 4x/day
skin breakdown around the Foley & Flexiseal
unresponsive except to moan and shake when being turned or suctioned
I drove home feeling almost ashamed of how I had spent the last 8 hours.Apr 26, '10I agree whole heartedly...which is what makes me so mad when people talk about this health care legislation and "Death panels" I haven't read the bill...but the way I understand it, it would simple mean your Dr. needs to have "the talk" with you about what your wishes are....rather than waiting until it's your loved ones who have to decide. A quick "do you a living will?" and would you like information on that ? Is not a great discussion starter when you are already admitting someone who is ill, scared, and trying to remember when did they have their last flu shot, and what year did they have their gallbladder taken out.Apr 26, '10This is an issue I hold very near and dear to my heart. Although I have only been a nurse for 1 year now (on med-surg floor) I find myself relating closest to the patients who come to our 3 "hospice suites" on my floor to die. These patients and families evoke in me the kind of compassionate nurse I know I have always wanted to be, and know I have it in me to be, but sometimes am not able to be due to patient load, crazy pt. families, etc. I would love nothing more to get into hospice nursing somehow, but am unsure of how to go that route (most places want nurses with hospice experience...I wonder if my care of dying hospice pts. on my floor would suffice?). At any rate, I applaud all nurses, MDs, families, and pts. who have the understanding and knowledge to accept death as a normal part of life and who work tirelessly to make hospice / palliative care the standard of care for all end-of-life people! I hope we as a society can get this to be the standard as opposed to the exception, although I know we have a long way to go...Apr 26, '10I work in oncology and once had an 80-something yo man who came down with some type of cancer. (I can't remember which one.) He ended up in our hospital's ICU with a GI Bleed that turned into DIC. By the time he got to our floor he was hopeful that he could go home to his farm soon. He had been strong and healthy up to this point and had a POA who was not related to him. He stayed on our unit for a few weeks. His blood counts were never right and we kept having to give him blood and platelets. The POA kept insisting on the most aggressive cancer treatment because "My Godfather is precious to me." ALL the doctors adviced against it. They said it would make his life miserable and probably wouldn't even work. But he kept insisting.
The patient, in the meantime, kept getting more and more depressed. He wanted to go home and sit on his porch and enjoy his farm. He didn't want to go through chemo and radiation. He was perfectly capable of making his own decisions, but the POA kept butting in, kept throwing his weight around, kept talking about money, and lawyers, etc.
It was criminal. I really wonder what ever happened to that man.Apr 26, '10Being a nurse yet having taken care of an Alzheimer parent I can see somewhat where people are coming from that I wouldn't have been able to see before. If not for the gentle encouragement of me and the other caretakers...my Mom would have never gotten washed, would have never eaten anything but ice cream (and I KNOW she would have refused any feeding tube), and would never have taken her Alzheimer medicine which totally prevented sundowner's and allowed more then five years with a good quality of life. If she was allowed the choice, my brother and I would have missed out on five wonderful years. I learned early not to call the "washing up" we did in the morning a "bath", to add sugar to foods that she would eat, to forget the typical breakfast/lunch/dinner and work on what she would and wouldn't eat, and to work on ONE pill at a time giving her some food after to make sure she swallowed it (as she hated to take any pills and wouldn't eat anything with them crushed). Refusing hospice for awhile because if agressive measures that wouldn't cause her pain or discomfort were needed we may want to do it...for instance she had kyphoplasty that helped her backpain tremendously. Hospice was finally called four days before she left us from her bed at home as she would have wanted...and even those short days was tremendously helpful with pain control alone.
My point is no one actually can tell you what is going on with family dynamics...IMO the best we can do is show the family all that is being done and the quality of life their loved one is living right now. It is up to them to decide once they have all this information.
I remember one group of nurses in ICU where I worked that despite hospital policy allowed the family to see the 10th code on a patient that the heart had given out a long time ago. Previously no amount of discussion from different professions helped in their decision process. After seeing the code the patient was quickly placed on hospice by the family.
Our jobs as nurses is not to be judgemental but educate, inform and be a patient advocate and yes, this can extend to the family.
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