"Time to Talk About Death"

Who gets to make that "BIG DECISION" about who shall live or die?
That depends on your belief system, many would say God decides. Many would say nature decides. Certainly not people. That decision is not whithin our power. What is whithin our power is to decide how somebody dies. We choose whether to prolong the death, or allow it. We can choose how much pain a dying person will suffer.

if you want these things, no government, judge, panel of death or whoever else has no right to decide if you get that blood work, MRI or even pet scan.

The issue is not usually about what the patient wants. I have never heard of a person requesting to be tied down, have tubes forced into every orifice and allowed to suffer, even when a meaningful recovery is unlikely. Or "even if I am so demented I don't recognize family and friends, spend most of my time moaning, and have parts rotting off, please prolong my death." I have seen many families request this, as a misguided expression of love.

Regarding panels of death. They don't exist. There are no proposals on the table that are suggesting they should exist. Honest.

see below

For instance just this week I had a pt who passed which for her was a blessing. I knew she had came to the facility to die when I first met her. She had a stromal tumor and they had resected part of her stomach to go around it. After that she had a poor appetite and when she did eat she had loose stool. she had a feeding tube in which she had pulled it out at least twice. When I would administer the feeding she could not tolerate more than 120cc at a time and would stop me to say that's enough I can't take anymore.
To me the sad part was the fact that the GI Dr told the family that it should not even be affecting her appetite. When the GI Dr was WRONG and I had to look this pt in the face knowing we were failing her. Her family was aggressive with this lady wanting her to participate with PT and asking her why she wasn't eating. Finally, EXTREMELY ANGERED I left a note with our house Dr to review her case. Because when she came to us she weighed roughly in the 120's and last weekly weight was around 90lbs. I was hoping he would take the bull by the horns and tell the family she's dying. Seeing how she was already taking megace every am and was currently taking remeron also for appetite stimulant. However, the house Dr didn't do that no.. he didn't instead he ordered a CAT scan with contrast. This poor little lady came in from her appointment with her GI Dr once again 1 day prior to the CAT scan appointment with an order for reglan and oxycontin. When I saw this little fragile lady sitting in her W/C her legs were only as big as her bones and bruising all over her poor little body. I began to cry and said to another nsg staff this shouldn't be going on this poor lady at that time her son came around the corner. I took her down to her room and helped her in the bed. I asked if she'd like a pain pill and something for her stomach and she said yes, so back I came with the vicodin and phenergan. Later that night after telling her son who said "she needs to eat and get better so she can go home, I know she's only doing this because she's here" I replied with "She's tired and she's been trying and she is very sick." At this point I wanted to tell him she's dying and it's only a matter of time but knowing that no physician had already said this I could not say it. So the next day she went for her CAT scan and returned only to die a couple of hours later. God rest her soul.
I'm sorry if I seem like a bleeding heart but I hate cases like this. Had the Dr told the family and we treated her with dignity in her last days then I would feel at peace with the medical management. I get pts in who are there for PT and I know the whole time they are there to die. I remember one case last year a man was there for therapy and the family wanted him to get better to go home. This man could not even turn himself in the bed and they were still doing therapy on him. That's when I said enough was enough and went to my DON and told her that he was dying and we were doing cruel things to a man who was dying. Sometimes when family is too emotional to say good bye you need the physician to step in and say enough is enough. But they can't because they are too worried about a malpractice suit. I care about the family but feel I am there for the pt I am their nurse and their advocate.

The end of life quotient is mixed with many different kinds of feelings and emotions. One of them being that a person may hopefully regain stability and lie out well for a while. With these kinds of miraculous stories its hard to just accept the inevitable for fear of potentially being wrong and sentencing someone to a preventable death even though that may seem like a logical outcome.

My dad has emphysema and is losing weight and memory. He inherently must know but refuses to join the "decline" bandwagon. In all honesty, its happening but his spirit is hopeful where slowly his body will most likely fail. My sister and I both agree that he should be able to go out on his own terms. A nursing home would kill his spirit , it is better for him to decline in his own surroundings and pass. Instead of us prolonging , prolonging him to live in an assisted living facility which he would hate and would suck down all his meagar life savings. At the same time its hard to allow such things to happen. With my own experience I now can better those of my future patients but still am unsure whether we should touch on the "deaths" doorstep language. Its a touchy thing and perhaps sometimes it is more felt than needed to be spoken. However, on the other hand sometimes families are completely in denial and can be taken by surprise when in fact it was no surprise.

What to do.. what to do....

I have a very difficult time dealing with this situation as well. A friend of mine started "In My Own Words". This type of end of life video has been discussed on other threads but I thought I'd add it here for info.


"IN MY OWN WORDS™ is a service providing a video advance directive. The video version will enhance your written advance directives and not replace them. Nothing is more compelling than a video representation of you describing the care you will want for yourself. In addition to reiterating your life support decisions, you can express your personal wishes in a video advance directive. For example, you may request music in your room, someone to hold your hand, read poetry, or reminisce. You can also request to have your pets with you and describe your hopes and wishes for your children and grandchildren. The video can be stored on a DVD, CD, flash drive or hard drive and easily downloaded to a cell phone, iPod or other music/video players. Copies of the video can be sent to your family, physician, attorney, or health care facility". www.drmelindaginne.com

I am not sure this is the answer, as I have seen patients specifically explain their wishes in their own handwriting and it's been put in the front of their chart....but never followed - pt was dying but doctors continued to "try" different and new possibilities. As a new grad I did not understand how a pt's wishes would not be followed. I understand alot more now.

This video idea is a good idea, and may give some patients hope that they're wishes will be followed.....but who is going to watch them???

To hhern: I am sorry if I made you angry. Maybe I did not phrase things right. I was responding to the article about medicare monies being spent for what some are saying are unnecessary tests and procedures for those patients that are dieing. Unnecessary because these costs would not change the outcome. Yes, I do believe in God and in His divine Will. What I do not believe in are doctors, lawyers and hospital administrators who believe that they can play God. Now, do not get angry with me again. Let me explain. During the first 20 years of my career (1960's to the 1980's--yes, I know, I am old), there were multiple court cases about what was called "Dieing with Dignity." Families were going to court to keep their loved ones on vents and in hospitals. There was no one single case, although some received more notoriety then others. In Illinois alone there were over 400 such cases in court during the 1980's. Hospitals and doctors were saying that the costs were too great and that the families had to face the inevitable. Families were fighting for a person's right to live as long as possible. Sure, many families were hoping for that miracle and praying for it, but many others knew what was happening and could not let go of their loved one. Because of all the controversy, politicians got involved and drafted some bizarre and ridulous legislature. The most touted of their stupity was the formation of panels/committees to be made up of hospital administrators, doctors and, of course,a hospital attorney. These were said to be impartial judges, non-emotional, to make the decision about when to "pull the plug". It took awhile, but these (and thankfully no legislation passed) ideas were disgarded and a compromise was made--thus, we now have living wills/advance directives. As of the 1990's, it is now required to have copies of advance directives in charts on every admission. Before then, it was not required. Living wills/advance directives are now required on every admission to every healthcare facility. If the patient or family does not have one, they have to sign a waiver. This is now law. The article about the medicare monies spent on the elderly and the drain on the system had me remember my hospice days when there were talks about panels and committees making decisions for what were called overly emotional families. It is only by God's grace that none of that foolishness passed. Abortion and the right to die with dignity were huge issues when I was a young nurse. Healthcare has changed, but the fear of lawyers and politicians making healthcare decisions still scares me. AS for doctors and their lack of honesty with patients and the families of dieing patients--there is no answer. My quess is that since Florence Nightingale first put on her white apron, some doctors have been afraid to deal with death, while others arrogantly talk about death. I read the other postings about doctors and dieing. I can also tell you many stories about some doctors and their lack of concern for dieing patients, even going as far as one doctor saying: "He has a DNR. Why should I bother to make him comfortable?". This arrogant young man would not order any pain meds for a bone cancer patient. I did go over his head to the medical director, got the morphine orders and the patient died three days later-without pain! I was written up by the administrator after the doctor complained, but I also was hugged by my supervisor and DON. The greatest satisfaction was the family sending me a birthday card with a letter that brought me to tears. But, being written up by hospital administrators and yelled at by arrogant narcicists did take its toll. I am more fearful now of being the advocate I used to be. I did lose that job and cannot find another. And I cannot be the only one fearful of being a patient advocate and being punished for it. This article about how we can stop the expenditure of medicare monies brings up those fears. Will this loss of funds for what some say are futile attempts to hang onto life lead to more outsiders entering and making healthcare decisions for families? Are families, in denial of their loved one dieing going too far? Are doctors who cannot talk about death to their patients, helping the famililes to stay in denial and continue badgering for more tests and procedures? Personally, I can relate to both sides and that is what I was trying to say in my original post. Death is an extremely emotional situation for families, patients and for those nurses who become patient advocates. And, in 40 years of being an RN, I have seen changes in care and in procedures that I never thought would happen. But, the question is: "Why have pt. advocates and caring left the healthcare field?" MONEY! Healthcare is big business, as we all know. When I read articles like this one with complaints about the expeniture of medicare monies on patients who are dieing, all I can think of is some lame politician picking up the gauntlet of "saving money for future generations" and making niave, wrong policies. It almost happened before. Next time, who knows. And, as I have said before, I know that spending somehow has to be slowed down. But, does it has to slowed down at the cost of a family's hope or a patient's desire to try to live longer? As a previous poster has said, education of the patient and his family is the only real way. But, how many doctors are going to take the time to do that? Very few that I know. Hospital administrators surely will not. As nurses, we really cannot until allowed to by the doctors and administrators. There is a fine line of ethics involved. If a patient or family POA asks, we possibly can--but if the doctor has not told the family, we cannot. AS I have mentioned in other posts, I am facing my own bout with cancer. And all I know is that I want everything done that can be done, because I do not want to die. Very simply, I do not care about the costs--I just want to live.

The will to live is a very, very powerful thing. I hear people all the time say "I won't go into a nursing home....I'll kill myself first." Well, I work in hospice, and I have YET to see someone do that, even when faced with imminent death......and I tell my family members that when they use that answer to avoid planning for the future. I know how powerful the will to live is. In theory I think I would check out if I had a terminal illness, but the reality is I probably would very badly want to live.....hopefully I could come to my senses before I had to suffer, but who knows? I do think we do people a disservice by not discussing death and dying with them as health care professionals, especially when they are healthy and not facing death at the moment.

What is MPOA?

Sorry for the acronym, Medical Power Of Attorney. It's used to refer to both the legal document and the person who's named. It gives a person the legal right to make medical decisions for another when they are unable to indicate their wishes.

This was another challenge for me today. Having to bring possible " Hospice Care" to a family's attention. It's like walking on eggs shells every time. Everybody reacts differently.