Managing symptoms for a �good death�

[NRSKarenRN]

found at nursing 2006:

november 2006

volume 36 number 11

pages 58 - 63

managing symptoms for a "good death"

marylou kouch aprn, bc, msn

contact hours: 2.5* expires: 11/30/2008

What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

[river1951]

Well said! Standing by with the paddles. That was always what I told my patients- I will walk with you. You will not be alone. I think the relationship is what can make a difference. I always used meds as the patient desired- they do get to pick- it is their death, after all. Bit the meds are not the reason for the game.

We seem to find the most awful problems with the totally dysfunctional families- they can decompensate at the drop of a hat and try to take everyone along with them.

[BeExcellent]

Families are always like herding cats. I try to figure out the one most likely to have a hard time healing the heart and I put that one in charge of something. Sometimes I ask them to check the comfort kite everyday, or call me at 4pm. So often, the folks try to protect each other. Once in a great while you get a family member that is just plain looney and has issues from way back. Openly, i have said, " O I am sorry you and your Dad have had a tough time in the past. You would be surprised how people can love and understand one another in a time like this." Once I privately talked to a young daughter that was causing havoc around her Dad's dying. Out of her own fear and grief she was drinking and decided to leave her husband..patterned high drama stuff forcing the family to resentfully refocus to her. I encouraged her to step up and get the blessings of being part of the process for her Dad. Her choice. She settled down long enough for her Dad to have a family surrounded peaceful death. I once had a liver pt straight from prison come home to Momma to die. He was big (ascites made him bigger) and a bully and angry. He thought a few pushes and slaps at Mom was okay dokay. ( No, not as confused as angry.) We talked. I told him he could do what he wanted the last two week of his life but whatever he did was the last he would be remembered. People would stand at his funeral and remember he beat his Momma and God would remember too. He caught on the two week part and cried and cried. "Two week! If that's all the time you think I have, I can be a good son for two weeks." And you know, he was.

[req_read]

BeExcellen…

Thanks for the late evening chuckle.

How did the big guy from prison die? Pain free? Uncomfortable? Awake? Unconscious? Did he ever resolve anything? Did he hit an emotional wall? How did he go?

Michael

[river1951]

Yes, families can be interesting. We have had several instances of severely abused children coming back when mom or dad was dying and care for them. I never get over being amazed at the generosity of spirit shown here. I have to confess.

The weirdest one was a daughter whose father had sexually abused her, the whole family had turned against her, she had gone to another area, made a really good life for herself, and when her dad was confused, dying from cancer, she arranged al his care, even to the point of paying some of the other family members to care for him. she had set her boundaries just so, that was how she could get through it all. I always marveled at her strength.

Another time we had a patient whose two daughters were soo abused. She had even locked them in the closet for long periods of time. They had the most awful time caring for her. Our problem was the doctor. she thought the daughters were "acting like babies". You sure could tell she was not a specialist in human behavior! We had to get our medical director to write orders to keep her in inpatient to die. We seldom do that, but it was apppropriate in this case. Unfortunately, this woman was very agitated as she died. It didn't matter what we did she fought. Very sad.

[req_read]

River…

I am not surprised the woman you describe was agitated.

I may have mentioned this in another thread somewhere but I too had a patient who sexually abused his daughters. He was very pious and did not know I knew of his abusive history. I asked him once if he had any regrets. He said he had lived an exemplary life and had no regrets whatsoever. One of his abused daughters was sitting next to me at the time and quietly wept.

As death drew near this man experienced physical discomfort which was controlled with medications, but he also had quite a bit of inexplicable anxiety… which was more difficult to manage. He never did acknowledge his past and died unconsciously.

You may fool some of the people all of the time, and you might even fool all of the people some of the time, but you can never, ever fool your self… the self always knows. And it is the self with whom the dying come face to face.

The daughters did their duty and helped with their father’s care all the way through, but it was hard for them. They did it, but they suffered.

Michael

[leslie :-D]

He never did acknowledge his past and died unconsciously.

Michael

i'm not sure i agree with this, michael.

his anxieties served as a catalyst for his consciousness.

just because he didn't verbalize remorse, or openly share his woes, doesn't mean he didn't wrestle in his own private hell.

anxiety, fear, agitation, depression are all forms of pain.

even the abusive mother that river spoke of, she might have benefited from some blatant 1:1 earlier in the process.

in the absence of anything pathologic, people on their death beds need to hear the truth.

these truths can be positive, fluffy and beautiful and they can also be horrid and evil; as long as they are truths.

so when i'm on my deathbed and a perceptive person tells me, "you spent way too much time alone during your life and as a result, you weren't available"...that will be a truth that stings and i may choose not to publicize my reaction but nevertheless, it doesn't make this truth any less plausible.

i would certainly imagine this truth manifesting itself as anxiety, perhaps agitation, distance, depersonalization....who knows? but i do know, it will manifest itself in some way and so, that makes it conscious.

we cannot will one's behaviors and responses to neatly fit into the text of a bestseller book.

we can only observe that one person's reaction is not synonymous with anyone else's.

and so we can always expect the unexpected-albeit ea response being as valid as the next one.

consciousness catapults a myriad of ambiguous phenomena.

ultimately, it's up to us, to find the door which leads to the much needed closure.

leslie

[river1951]

Which leads me to a place I always wonder about. I have only had terrible problems managing symptoms a few times. Occasionally, in these cases, some light is shed by someone in the family on an unresolved issue. If the patient is able to resolve the issue (with help usually ), symptom management becomes easier. I remember two particular cases- both middle-aged folks. One was not speaking to his dad, the other had issues he felt were unresolvable. In the first case, the dad came around to talk when he found out his son was so ill; in the other case we held a healing ceremony so he could let go of the issues with intent that people he harmed would be healed. Both persons had far better symptom management after the events.

But occasionally I wonder. What do other folks experience? Maybe we should make anxiety the 6th vital sign.

Love reading everyone'sdiscussions.

[leslie :-D]

that's a valid point, river.

ever since i've worked hospice, i've always consciously (and i'm sure, unconsciously) used anxiety as the 6th vital;

or whatever undesirable feeling the pt is experiencing.

plus i loathe the dx of terminal agitation.

if you look at it as a transient occurence, chances are it will indeed be transient (in the absence of pathological variances).

how did your pt respond to the healing ceremony?

i know you said that symptom mgmt was easier afterwards.

but was he aware of the intent of this ceremony? he knew it was to heal those he felt he had wronged?

now that's what i would call a good death-everyone is healed, returned to balance, 'normalized', 'stabilized'.

but whenever i hear of a pt being profusely medicated for terminal agitation, i would give my right arm to be able to spend as much time with them as humanly possible.

i'm that confident this agitation could be resolved.

every person on this earth, has the right to leave here with boundless, positive energy and so, all loose ends must be neatly tied before their bodies die.

an ideal?

yes.

but i don't know why, in this day and age, this couldn't be a reality.

leslie

[river1951]

Yes, Leslie, it was for that reason. He had been a bomber pilot in WWII.

No easy fixes- my ownb father in lawfelt guilty he had volunteered to bomb Dresden- of course that was after he had worked flying folks out of the concentration camps, we all understood, but he worried over it.

Talking and spending the time always seems to be the answer. How we're going to get around this damn managed care, I don't know!

[BeExcellent]

That's what makes all this so GOOD. Some art, some science and mostly intuition. In the end, the only ones to ask are those left behind. Sometimes, WE are the only ones left behind. We juggle managed care, office morons (oops, did I just let a bias out?), scared folks, juicy pts, And we struggle with our own sense of life and death. To quote a commericial. It is priceless. We could not buy the intimacy, maturity and humility that comes with open hearted hopsice work.

To answer your question Michael, my big bellied pt died just fine. Not alert, liver failure dulls the mind, but just fine. He went to bed and went deeper and deeper into sleep. The day or so he was on auto pilot allowed his family to talk about the "little boy" he had been. Who is to say that he wasn't conscious behind those eyelids? Let me throw this out. Is there a difference in death when death comes swift and unexpected, car crash, fire, massive MI or stroke? Is that a conscious death? I read an interesting thing that said when black boxes as analyzed the most frequent last words recorded are expletives. Like birth, I don't think the traveler needs to be in control or retain the consciouness. For the most part, I like life just fine but I don't think I would judge it by what I experienced at birth.

[leslie :-D]

Like birth, I don't think the traveler needs to be in control or retain the consciouness.

agreed.

conversely, a 'good', swift death will bypass all the evil yet necessary work to be done.

truly, who wouldn't just want to get it over with?

yet, through all the yrs of work w/my pts, i've consciously opted to start my life review now.

and hopefully by my life's end, i will have taken one of the finer journeys.

i prefer to be conscious throughout my life and not just at the end.

makes perfect sense to me...

leslie

[river1951]

agreed.

conversely, a 'good', swift death will bypass all the evil yet necessary work to be done.

truly, who wouldn't just want to get it over with?

yet, through all the yrs of work w/my pts, i've consciously opted to start my life review now.

and hopefully by my life's end, i will have taken one of the finer journeys.

i prefer to be conscious throughout my life and not just at the end.

makes perfect sense to me...

leslie

Ok, guys, how I see it- this is one of the gifts from doing this work is to realize both the importance and uselessness of our lives. The importance refers to any moments we have the ability to touch another in a positive way; the uselessness of spending most of our life in a quest to pile up possessions.

The California hospice association is putting on a teleconference next week- "Vital spiritual components to consider at end of life"- actually looks pretty good-I'll let you know what I think.