End of Life Decision Making

aimeee, BSN, RN · May 14, 2006

However, looking at dying process for what it actually is and then using accurate, descriptive terms (as opposed to inappropriately warm & fuzzy terms) when referring to it would be a reasonable approach.

I've never been keen on the END part of end of life care either, but, as Leslie states, its what we do. Its the end of our BODILY existence, whether or not we continue to exist in some other form or plane. I'm open to hearing other options for nomenclature. I'm guessing the subject has been debated ad nauseum around boardroom tables for some time. While its imperfect, at the moment I can't come up with a better term.

I have met many people who steadfastly believed that they would be singing in an eternal heavenly choir in that next existence and yet that did not seem to make one iota of difference in their readiness to go join it. Conversely, there have been many who believed that once they took their last breath, that was it, and yet, were peaceful and ready, calm and accepting. The same can be said of their families.

I think there are two things that do make a difference. The first is the ability to relinquish the illusion of control over circumstances that are beyond us and accept it over those things we can influence...our own minds, emotions, and relationships with others. The second is tending to unfinished business, whether that be relationships, finances, life accomplishments or whatever.

req_read · May 14, 2006

To say that death ends bodies is undeniable. To say that death alters one's life is equally undeniable. Those statements are factual and neutral. On the other hand, to contend that death ends life is proselytizing; i.e. making statements that may be part of your personal belief system, but that you simply can not know to be fact.

Much of this discussion comes down to a question of one's personal definition of key words, or concepts. If you define "life" as bodies, then yes, death ends bodies ("life.") However, if you define "life" as something more sophisticated and transcendent; e.g. as "consciousness" or "spirit," then in all probability, death does not end "life."

It would be perfectly appropriate to call hospice care, "end of body care," but to contend that death ends life is your personal view, based on your personal definitions, and ought not to be imposed on others.

All the great spiritual leaders throughout history have told us that we (humans) are more than just bodies, and now leading scientific thinkers are telling us the same thing. So I must say that I am a little confused as to why experienced hospice nurses would insist on precisely the opposite view.

Hospice came up with a perfectly good term in its beginning; i.e. "hospice." I have had patients come into ER and state they were "hospice" patients... only to discover later that they were not in hospice at all. They had a terminal disease, but could not bring themselves to say the word "terminal," and they certainly could not bring themselves to use the 'D' word ("death" or "dying.") But the word "hospice" suited them because it got the idea across without being harsh & threatening.

And yes, lots of people who project an image of being devout do not handle their own dying process well. There are very good reasons for this (which are described in my 3rd book.) The short version of the reasons behind it are this: Who we are is not our body, and we most certainly are not the façade we project.

Everyone has a façade... a false face that is put on for political and social effect... and one of the most common façades of all is that of being religiously devout. One of the reasons why I so enjoy being around dying people is that dying process dissolves their façade and voila!... the real person is revealed. As a cross-section of society in general, dying people are probably the most real people you will ever meet... which I have always found to be refreshing.

Your contention of having seen "many" who thought death would be their absolute end and then died calmly and peacefully has me puzzled. I have been around a lot of dying people and quite frankly, have never seen that even once. In fact, I spent a considerable amount of time & effort looking for just such a person, but could never find one. Perhaps your clientele are superior to mine... or maybe there is more to the story.

One of the advantages I had in my hospice experience was that I had time. My hospice was small and I ran it and I could spend as much time as I wanted with patients & families. I understand that in today's hectic business world, dominated by demands for productivity, my situation was truly rare. But I was fortunate enough to have time and a keen interest in dying process and I studied it diligently... and I never once saw what you claim to have seen many times. I would be most appreciative to learn about some of those cases, along with all the detail you might provide.

But the salient point here is this: Many people who are not "people of faith" as the saying goes, who do not attend any sort of church etc., and who have no religious affiliations whatsoever, still have rich & diverse inner spiritual lives. They do not wear it on their sleeve... it is private. But that does not mean it does not exist. These people tend to be open in their views... their views are eclectic, so are diverse and open by nature. The casual observer would conclude these folks are virtually a-spiritual, when in fact they are very spiritual, they are simply not religious. And if they do not want to be bothered by someone asking them about their private views... if they sense the person asking would probably not get it anyway... they might simply state they have no spiritual views or expectations and thus, cut off all further discussion right there.

The key to dying gracefully (notice I did not say "fearlessly") is not in whether a person has made of show of being devout, but whether they keep an open mind. The person who says, "Well, actually I do not think life goes on... but if it does I would be pleasantly surprised," is likely to handle their own death better than the person who says, "I know exactly what will happen and I am looking forward to it." Why? Because dying is a learning process and going into death is going into the unknown. Claiming to know the unknown is a contradiction in terms, and how can you teach anything to someone who already knows everything?

PANurseRN1 · May 14, 2006

If you cannot accept that some people believe that there is no life after death and can still go through the dying process peacefully, then you shouldn't care for those pts. Just because you need to believe in an afterlife doesn't mean everyone else does. I've seen people who firmly believed they were "going to be with Jesus" spend their last moments terrified about dying. So much for the "need" to believe in an afterlife.

I would be furious if I were dying and someone were yammering to me about my "next life." That presumptuous. It is not the nurse's place to try to force his/her beliefs onto a pt., period.

leslie :-D · May 15, 2006

I'm guessing the subject has been debated ad nauseum around boardroom tables for some time.

i'm with you aimee.

furthermore, it's not as if we tell our pts that we provide end of life care: it's addressed as hospice.

and it is end of life care, here on earth.

i think all of us, at some point, have contemplated life as we know it; and the preponderance of a hereafter.

to debate the semantics of what kind of care we provide, doesn't hold top priority for me. yes, i'm sure it has been discussed ad nauseum.

whether i know if life stops here or not, wouldn't have any effect on how carefully i talk w/my pts. i would never be so insensitive as to refer to my services as 'end of life'.

i think i'm done here.

leslie

req_read · May 15, 2006

And therein lies the point. If you acknowledge that it would be insensitive to say it to patients, then why say it at all?

Second, semantics do matter. What we say without thinking is a clue as to what we are really thinking... Freudian slips, as it were.

There is a vast difference between "end of life care" and care that assumes life goes on. "End of life care" involves just smoothing things over until the "end." It is a forgetting... just put on some nice music, try not to think about your life and soon it will all be over.

Who was it who wrote the book, Everywhere You Go, There You Are? That is the essence of preparing for continued life. You don't get out of this that easy... whatever mess you made here is going with you... unless you get busy and start doing the resolutional work now. The whole point of providing care that assumes life is continuous is to resolve all of one's unresolved junk. It is not smart to carry a bunch of unresolved junk from this phase of life into the next phase of life. And if you study dying process closely you will discover that is exactly what it (dying process) tries to get us (humans) to do.

We have all heard that, "sticks and stones may break my bones but words will never hurt me." But there is a very real danger in semantics, and it is this: If you say something often enough, pretty soon that is what you start thinking... and thinking that death ends life will eventually effect how you deal with dying process.

If a dying man laments an unresolved dispute with his son, the nurse who practices "end of life care" says, "Oh don't worry about it. He's a big boy now and I'm sure he will get over it." Then, as she hits the bolus button on the morphine pump she thinks to herself, "Soon it will all be over anyway so what's the big deal?"

On the other hand, the nurse who practices continued life care will work to assist her dying client in actually resolving the issue.

I suspect, Leslie, that you actually do practice continued life care. So if that is what you practice, why not call it that and think of it in those terms?

I have no idea what goes on in the board rooms of the National Hospice Organization et al, or whether this issue has been discussed. Nor do I consider those people to be experts on dying process... experts on running large organizations maybe, but not experts on dying process. You, the people down in the trenches who interact directly with the dying are the experts on dying process. It is what you do and say that matters... and if you are providing continued life care (as opposed to end of life care) then the people in ivory towers should pay attention and adjust their mottos and logos accordingly.

There is no study of dying process per se. There are many and varied reasons for this but that subject is too large for inclusion in this discussion. Suffice to say, what we are learning about dying process is coming from the field, not from the board room. What we know about dying process is coming from the bottom up, not from the top down.

When a dying person hits a wall and panics he does not call the boardroom, he calls you... so you need to know precisely what you are about.. and you are not about ending life but rather, resolving life's issues... as if life goes on.

When a dying preacher hits the wall of doubt and confesses to you (the "expert" on dying) in tears and a barely audible whisper that he is not "sure"... his life will go on or that he will be "saved" (whatever that means) what are you going to say? "Oh don't worry about it... soon it will all be over."

I don't think so.

I am quite sure you would knock yourself out trying everything in your power to assist him in resolving his fears. And if that is what you do, you are not practicing "end of life care," you are acting as if life goes on.

req_read · May 16, 2006

Another area in which semantics may have a rather chilling effect has to do with the direction hospice is heading in general.

If you stand back and look at hospice from a global perspective one of the trends that has been occurring over the last couple of decades is an increasing proportion of 'for profit' hospices. Nurses in this very forum have commented that hospice is a "cash cow." After leaving hospice myself I had a private duty job for awhile, caring for a lady with brain cancer. I got hospice involved but was shocked at how it was handled. The nurse was nice enough but obviously did not have time to spend with me or the patient. She would zoom in, drop off some chux, gloves, meds etc., ask if everything was okay and disappear in a cloud of dust.

The vast majority of hospice revenue comes from the government (Medicare & Medicaid) and the government never intended for hospice to be a "cash cow." A chaplain I know quit one hospice after he saw the CEO driving to work in a brand new hummer. The government is already looking at hospice's profit margins and wondering how to tighten things up. And when that happens the effect will be that you (front line hospice nurses) will be expected to do even more with even less. If you think you are rushed now, stick around. The emphasis on "productivity" is going to increase.

So what takes more time; a nurse sitting with a distraught patient helping him to resolve his life issues... or just turning up the sedation and racing off in a cloud of dust?

With the shift in terminology there is a shift in attitude. At first it seems subtle, but when projected over the long haul it may not be so subtle after all.

Then throw in the baby boomer factor. It is already feared that we will not be able to afford their care. But we can see trends converging in hospice to help solve that dilemma; i.e. more efficient ending of life... fewer nurses, less teaching, less caring... after all, it will all be over soon anyway.

BaileyBarash · Dec 28, 2008

hello -

i am a documentary maker and hospice volunteer in atlanta, georgia.

i've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.

it's called 203 days.

you can view it in its entirety at the following university of connecticut website along with a study guide.

http://fitsweb.uchc.edu/days/days.html

it is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.

203 days won the first place 2007 film award from the national hospice and palliative care organization (nhpco).

if you'd like more information please go to my website

http://bbarash.com/bb_203days.htm

i hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.

sincerely,

bailey barash

leslie :-D · Dec 29, 2008

it was a realistic portrayal, even w/those things that bother me.

for example, during her final days when she was semi/unconscious but was noted w/labored breathing.

why did she only get morphine when she was symptomatic?

her dtr even observed that after she got the morphine, it was the first time that day her mom had looked comfortable.

and while seemingly minor to observers, it was important for the mom to be clean, not go in a ltc facility and to have her cognition remain intact.

obviously she ended up in a (jewish) ltc facility and ms didn't seem to be much of an issue.

but knowing this woman wanted to be clean and present well groomed, it bothered me to see unbrushed teeth, messy hair and the implication that she wasn't always clean.

such minor interventions to give, but downplayed.

had the pt watched the video, she would have been horrified.

and that bothers me.

but as i stated, it was realistic, since these things do happen.

so thank you.

i appreciate your gesture and efforts.

leslie

Whispera, MSN, RN · Dec 29, 2008

I tried to open the video and got an "error on page" message. grumble, grumble...it seems like it would have been very interesting!

BaileyBarash · Dec 29, 2008

I'm sorry you had a problem. When you have time, please try again. Go to

http://fitsweb.uchc.edu/days/days.html

Then go to the right-facing arrow in the lower left hand corner of the black screen and click once on that. If that doens't work, it may mean you'd need to download Flashplayer.

Thanks for trying.

Bailey

Whispera, MSN, RN · Dec 30, 2008

Thanks! This time it looked totally different when I opened the site AND it worked!

BaileyBarash · Dec 30, 2008

I'm so glad. Hope you found it useful.