Care at the Time of Death

MQ Edna · Sep 16, 2007

Hi Earle58! I have been reading many posts on this site since I found it a while back and from what I have read of yours I have really come to respect you and your knowledge and experience with hospice nursing. I agree with all that you wrote in response to my post except for the part about evolution not being taught in schools. It is the only "theory" of how life began that is allowed to be taught in public schools. Some states have tried to get Intelligent Design taught along with the theory of evolution but I don't know of one yet that has suceeded in doing so. That was one of the reasons we opted to teach our kids at home. But back to eol experiences and how some people (family, nurses, doctors, etc) will seem to go to great lengths to deny them, you are so right about the need to be careful with trying to use medications when what may be needed is a listening ear and a holding of the hand. I totally understand that you are not saying that drugs are not important or needed but that situations arise where a pt may need to work through something (get it off their chest, so to speak) and medication may just prolong the anguish. Like putting a bandaid on a festering wound that really just needs to be drained. I like how I've read in other posts about the need for dying people to do "work" when they know they are facing eternity. We all have "baggage" that we carry and it really is a blessing for those who are given the time to be free of it before their mortal life is over. I will take to heart what you said about "going there" with each patient because this is one time in their life when it really is "all about them". I know I will feel privilaged to go along for the ride and make it as smooth of a ride as I possibly can. I do want to say "thank you" for all that I have learned from you via allnurses.com. One thing I always want to be is teachable!

aimeee, BSN, RN · Sep 17, 2007

Good post, Leslie! I am not out in the field much but I am constantly reading the oncall reports and the sense I get is that those who have accepted that they are dying and made their peace with everyone they need to here, do not suffer greatly from terminal agitation, or only rarely. The patients who haven't had a chance to say Byock's 5 things, and who are not ready to die, are fighting it with every living cell in their body and they do not go gently. Drugs are very ineffective with those patients.

MQ Edna · Sep 17, 2007

Hi Aimeee! You are another one I call my online "mentor" because of all that I have gleaned from your posts about hospice nursing. I cannot thank you and earle58 (and others) enough!!! Could you please tell me what Byock's 5 things are? I know I could probably "google" it but am thinking maybe you might add something to it from experience. I just love this site for all that I have learned by reading the posts from those who care enough to share. You all are a blessing to me!

MQ Edna · Sep 17, 2007

req read, thank you for sharing so much of your heart and your desire to help people as they make the transition to their new life. Plus, you helped me understand the theory of relativity! It has helped me to understand how with God there is no time. Time is dependent upon man's relationship to his surroundings and others. At least that is what I came away with.

req_read · Sep 17, 2007

IRISHPOOH…

Judging from your nom de plume I suspect some Irish blood? One of the “experts” in the DVD, Down The Rabbit Hole, is Irish too: Michael Leadwith, Ph.D. Former Professor of Systematic Theology, Maynooth College, Ireland. Member of the International Theological Commission. He is an international lecturer in theology & mysticism and creator of, Deep Deceptions. The Great Questions In The Hamburger Universe.

I’m sure you would find him interesting.

Congratulations on getting back into nursing by the way. That takes courage!

Going back to one of the first questions you raised with Leslie; i.e. the effects of teaching evolution in schools…

One of the keys to understanding dying process is being open. Expect the unexpected. You will undoubtedly see things that, at least initially, make no sense to you. Be prepared to let go of some of your preconceptions… because they won’t always fit with the clinical picture.

Why people believe what they do regarding life & death is highly complex, multi-faceted, steeped in history & tradition, and like most things having to do with human beings, runs far deeper than what appears on the surface.

One of the first and most puzzling phenomena that confronted me early on in hospice work was: Why, when the majority of my patients were Christian and claimed to believe in life after death, did all (as in- every single one) act like they did not? After a few years of studying this question… not to mention, studying dying people directly… I began to understand it. In fact, I wrote a book about it. But the reasons behind it are far, far more complex than a few perfunctory lessons in evolution.

Best Wishes with your return to nursing.

Michael

MQ Edna · Sep 17, 2007

Thank you, req read, for wishing me well with getting back into nursing. It has been with great trepidation and lots of prayer due to the number of years I've been away that I am taking steps forward. Actually, I never thought I would go back but I said in '82 after my dad's hospice experience that "if I ever do go back I'd like to work in hospice". Sure and begorrah, you're right about my moniker giving away my nationality. I'm a genuine Irish Colleen :). Thanks for the suggestions on the works of Michael Leadwith. I am intrigued by the title you mentioned and am wondering what a "hamburger" universe means? I find it sad to hear that professing Christians acted like unbelievers when their time to pass on came. When you think about some of the comments by Nero's solidiers as Christians were rolled in tar and set on fire for the ruler's parties, "Those Christians, they die well." I do know personally Christians who were dying and had no fear or doubt of what they were going through and where they were headed. When I was a student nurse I had a lol who came in with pulmonary edema but after treatment was getting better and the doc was ready to discharge. She kept saying, though, that she was going to die. I (and others) kept telling her she was not going to die, that she was going to be released soon. Shortly after all the reassurances were given she was found with the Bible open, staring at the cross and dead as a doornail. Now Michael, I will leave you with a funny story about this lol. She had a foley cath in but kept saying she had to pee and wanted the bedpan. I kept assuring her that she had a catheter in and didn't need the bedpan. Well, again, this sweet little old lady said she needed the bedpan. Me, being Nurse Goodbody, planned the scenario out in my head. I'll say, "Why do you need the bedpan." She'll say, "Because I've got to pee." I'll say, "No, you have a catheter in." So, I said, "Why do you need the bedpan?" She said, "Because I have to s--t!" You should have heard the roar of laughter from the other 3 ladies in the 4 bed ward! I turned red and one of the other lol's said, "Well, you asked her!" Have a great day, Michael, and keep on keeping on. Your posts are deep and give us things to think about. Colleen

MQ Edna · Sep 17, 2007

PS req read. Ever read any of Francis Shaeffer's books? He can be a bit "over my head" but me thinks you would enjoy reading his works. Colleen

req_read · Sep 17, 2007

Colleen…

I don’t think I’ve read any Francis Schaeffer, but then I don’t remember names, so I might have.

As described (in a different thread) I discovered, in dealing with the dying, that sooner or later they hit an emotional wall. How long it takes for them to get over it depends on a variety of factors, not the least of which has to do with their expectations. If they thought they were above that sort of thing… above being human and having human emotion… then they are likely to be blind-sided by it and have a harder time working through it than if they simply admitted to being human in the first place and therefore subject to human emotion. One of the things I would sometimes tell patients who found themselves stuck in this dilemma (having fear when they expected not to) was, “Jesus did (have fear.) Do you think you are stronger than Him? He worked through it though… and so can you.” Then the pt could think, “Gee… I guess I’m not such a failure after all. I’m just like Him.”

Another way of explaining it is to say, if you (a human being) expect you are above being human, you are setting yourself up to fail.

Some factors that obscure when pts hit the wall are, first of all, you aren’t always there. Most hospices have several nurses, several case managers even, and perhaps night or weekend on-call nurses. When I started running hospice I was it… chief cook and bottle washer… the chief, the Indians, the whole enchilada. I was there for everything that happened with every pt… so I knew when they hit the wall.

I also knew when they got over the wall (if they did) and were looking forward to where they were going. At that point their friends would say things like, “See! No fear at all. He has real faith by golly. Believers don’t have fear.” But I had been up with them in the middle of the night doing the work, so I knew better.

Another factor that may obscure what is really going on is identifying yourself, up front, as someone who expects to have no fear based on your beliefs. If you do that, when your pt begins to have doubts/fear (which he will) you will probably be the last person he will speak to about it. Therefore, you run the risk of seeing only what you want to see, as opposed to the whole picture. Therein lies the core reason why the founders of hospice worked so hard to keep it free of religious doctrine.

One of the biggest problems with religious doctrine is that people are wont to use it to support their own dysfunctionalism. Now don’t anyone get upset because I am implying you might be dysfunctional. As John Bradshaw points out, we are all dysfunctional… it is only a question of degree. And if you think about it, that is no different than saying, “No one is perfect.” So unless you are perfect, you are dysfunctional. And one of the core reasons why people are dysfunctional is because they want to think of themselves as being ‘better than’ someone else. So they gravitate towards some religious doctrine or other that supports this view (delusion); e.g. Christians are ‘better than’ Muslims, or Muslims are ‘better than’ Christians, or this brand of Christian is ‘better than’ that brand of Christian. If you pay close attention you will see that dying process does not play favorites… no one is ‘better than’ anyone else. People are people, period.

One of the most profound realizations of quantum theory is that we are all part of “Universal Consciousness.” In other words, we are all One… one of the implications of which is, no one is ‘better than’ anyone else. No one gets a free pass or special favors based on what religious organization they belong to. Anyone can make their dying process more difficult by going into it expecting special treatment, or they can get through it relatively easier by realizing that they (just like everyone else) are human.

The question is not whether we are ‘better than,’ the question is whether we make our living/dying more or less difficult by the beliefs and expectations we choose to hold. It has been my observation that those who believe they are ‘better than’ and expect preferential treatment are disappointed and therefore have a harder time… whereas those who “love thy neighbor as thyself, (because in a way, your neighbor is your self) tend to have an easier time.

Actually, I could probably make more money by telling people what they want to hear… as opposed to the facts. Some authors do that; i.e. sell “fearless death.” No doubt they make better money than I do, but I would feel sort of crumby about myself when the people who purchased my books got into their dying process and discovered I had lied to them.

Michael

MQ Edna · Sep 17, 2007

Michael, I totally agree with you about the problems with religious doctrines. I, too, have seen people being "beaten", so to speak, into putting up false fronts in order to not be seen as one lacking in faith. I honestly don't see how anyone can get to the brink of death without experiencing fear. I tend, in my own mind, to equate to a small degree the experience of childbirth to that of going through the experience of death. No one can tell a woman exactly what she's going to feel and experience when it is time for her to give birth. You cannot know something you've never experienced before and in that there has to be an element of fear (fear of pain, the unknown and even the possibility of dying while giving birth). If and when I do get to practice hospice nursing I can assure you that my patients will not even know that I am a Christian unless they ask. It is not about me and I want to leave "me" outside their door and make it clear that it is all about them and that I am there for them. People are free to believe whatever they choose and no one should be trying to foist their beliefs upon another especially when they are in such a vulnerable state. My purpose is to relieve pain, show kindness, allay fears, show empathy and compassion and be ready to help in whatever the patient needs. I hope I haven't come across to you as someone who thinks she's better than anyone else. Believe me, that's the last thing I want anyone to think I believe. Colleen

req_read · Sep 17, 2007

Colleen…

It sounds like you should make a great hospice nurse. Certainly you are a lot better at having babies than I (I wouldn’t wish that on my worst enemy.)

I do wish you the very best in your comeback career however.

Michael

MQ Edna · Sep 18, 2007

Thank you, Michael! The encouragement I have received on this website has helped immensely and that was very kind of you to say that I should make a "great hospice nurse". Cannot tell you how much I appreciate the vote of confidence, especially coming from a seasoned hospice nurse like you! I will give it all I've got to ensure that my patients get the best care I can give them. I can tell from reading your posts how important giving good hospice care is to you, Michael. And even though you are not able to work like you once did, this website is a good medium for you to "mentor" young (not in age) "grasshoppers" such as myself who are just starting their journey. I know I'll be back on here from time to time with questions, concerns and probably some complaints but more times than not, just to glean more from those who have been further down the road than where I'm at. You know how we don't like, for the most part, to say something positive about ourselves when asked? Well, I think if I had to come up with something that's good about me I'd say I'm "teachable". So even if I'm not writing posts you'll know I'm "lurking" around the site to see what else I can learn from all the other "posters". CS Lewis had a student who quoted his father as saying, "We read to know we are not alone." Well, we could say something similar about going online. Am glad I am not alone in cyberspace :) Colleen

req_read · Sep 18, 2007

IRISHPOOH…

“Teachable” is high praise indeed.

So much of our world view revolves around established thinking patterns… and of course, what those patterns might evolve into.

Incidentally, “evolution” and “intelligent design” are not incompatible concepts at all… although they are often presented in that way… as either-or… black or white… binary. The binary approach to problem solving seems to have become even more entrenched with the advent of cable news… which presumes to present “both sides” of any given issue by inviting two nasty-mouthed advocates who run one another’s perspective into the ground… as opposed to engaging in intelligent dialogue. The result is seldom more enlightening than watching a fight in a beer-bar parking lot. But it sells copy, so we get what we like to watch (and deserve.)

Heaven knows how long it will take, but the concept of all things being connected by universal consciousness has enormous consequences. All of our current thinking patterns will be affected, eventually, by this one concept.

Here is just one small example…

If I (me & my body) are a manifestation of universal consciousness, then in a very real sense, I pre-existed my current “life.” And if that is so, certain questions immediately come to mind; for example, what did I come here (Earth) for? What did I come here to do?

Whether one agrees with that possibility or not, the wisdom of adopting that thinking pattern cannot be denied… particularly when compared to the typical, or consensus, thinking pattern prevalent now. The current consensus thinking pattern runs something like this: biology was an accident of the universe, consciousness is an accident of biology and I, personally, am an accident of my mom & dad’s lust. Therefore I bear no responsibility for me. I am just one big accident so don’t anyone expect big things out of me. I had nothing to do with any of this so leave me out of it. I just want to get through it with the least amount of fuss & trouble… thank you very much.

Compare that to this thinking pattern…

What did I come here for? Hm-m-m… let’s see now. I think… no I take that back… I FEEL like I came here (after raising my kids of course) to get involved in hospice. To help people, to care for people, to make a difference in people’s lives, to give people support in their time of need, to relieve their suffering… and on top of all that I think I came here to learn… first hand… about my own immortality. By ‘being with’ people… in an intimate way… while they are in transition I can learn… in a significant way… more about who I really am.

When it comes time to die, the former (current consensus view) tends to leave people confused about what “life” is all about… wherein the purpose of life amounts to little more than the urge to live another day (linger.)

With the latter thinking pattern in place it would be far more likely that when it comes time to die the person would say, “Well, I think I have accomplished most, if not all, of what I came here to do. I am satisfied with my accomplishments and therefore am ready to move onto the next challenge.”

Of the former we are likely to hear comments like, “He was a tough old bird! He didn’t give up.” (He lingered… although for what purpose is not clear.)

Of the latter we are likely to hear comments like, “He seemed happy and serene somehow… almost like he knew he was going.” (And of course, this is the kind of person who is more likely to cross over wide awake.)

Our thinking patterns have enormous consequences on our behavior… including how we die.

Michael