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.

[Em1995]

I, myself truly believe the angst, adversity, the "not so nice stuff" helps keep one whole.

Sharona and all:

I am so grateful to have found all of you! I'm a seasoned hospice nurse (former ER and psych nurse) and have longed to find a group of people involved in an existential discussion. Yes, symptom control is important, but the unspoken, spiritual aspect of this work is what fascinates me. The onesness of us all is so apparent.

There are moments I have found where my patient and I communicate without one spoken word. I distinctly remember a man who died while I was with him not long ago.I was exhausted and emotionally drained and not one word was spoken between us, yet volumes of feelings were processed.

I hope we can continue this discussion.

Em

[Em1995]

I continue to read all the old posts and this discussion reminded me of a patient who "died consciously". I know what Micheal means and it doesn't mean tossing symptom control out the window. He advocates utilizing meds when necessary, but not to the exclusion of the personhood.

I had a woman who was dying of ovarian cancer. She was getting liquid morphine for pain control and the family wondered out loud to me:"do you think she is hanging on for something or someone?" I responded that this might be so and asked if she had talked to all those with whom she wanted. The sister then took me aside and told me that when the patient was a young woman, she had a baby out of wedlock (a sin in those days!) and she so wanted to see her daughter as she had never met her. She asked me if I thought that perhaps they should call this daughter. I left it up to them as they knew the patient very well. Pointed out that I sensed a longing, but I couldn't figure out what it was. They did manage to find the daughter and she came to visit the patient. They had a wonderful visit and the patient visibly relaxed the next day when I visited her. She was laughing and joking and I could feel a lightness in her heart. She died that evening, very peacefully, surrounded by her family....and, her long-lost daughter.

There's more to this. A month later, I was asked to do an informational with a woman in a nursing home. I provided her with all the usual hospice information and attempted to answer her questions. Her family was present and they asked some very good questions. At the end of our meeting, one family member asked to see me at the nurse's station.She introduced herself and stated she had requested me as her mother's nurse. The woman was the long-lost daughter of the patient in the above paragraph!! She started to cry and told me that had I not encouraged the family of her biological mother to pursue some "unfinished business", she might never have met her mother. I still get chills when I remember this. Some might say I crossed boundaries and should have called in the social worker. The fact is, the family did not want a social worker. As a nurse, we need to listen to our gut instinct, that feeling that we can't quite articulate, because the energy we so often feel is the only way we can palpate an unspoken need.

[Simplepleasures]

This may seem a simplistic observation on my part, in light of all the deep thinking of the previous posters, but when in the presence of a dying patient I feel awed and humbled to be a part of a transition to a much greater existence,to something I have forgotten, like a song I am trying to remember, but just cant.

I almost envy the dying, don't get me wrong,I love life, but it seems as if they are truly going "home", from their tasks here on earth. I was told that we are all great spiritual beings and the greatest ones chose the worst life for themselves here on earth in order to learn the greatest lesson.

[req_read]

Interesting thoughts. Thanks.

Michael

[zacsmimi]

I disagree with the idea that the goal of a good death is to die consciously. While I applaud the concept, my experience has been that the goal of helping patients die should ALWAYS be based on what the PATIENT wants.

[Em1995]

I agree with "what the patient wants", but I also know what Michael means and he does NOT condone physical suffering. I have had patients go "consciously", but they also had their pain very well-controlled.Michael?

[req_read]

It is axiomatic that we live in a death averse society and that the majority of individuals know almost nothing about dying process. Therefore it is impingent upon the “experts” in the field to educate themselves as thoroughly as possible so as to maximize their ability to assist each pt in their particular situation. In that sense, what is best is situational. Dying process is highly complex, patients are highly complex, families are highly complex, and so what is “best” has to be matched to an array of factors, each of which is highly complex in its own right. Which gets back to the notion that hospice nursing is more art than science.

The scientific approach tends to boil things down to a simplistic maxim; e.g. keep the pt comfortable… that is all that matters. Or do whatever the pt wants… that is all that matters. Following simple rules is tempting at times… it sure would make things easier! But alas, as it turns out, life is complex.

Because of society’s aversion to death & dying John & Jane Doe have little hope of acquiring a deep understanding on that subject in the few weeks or days prior to their death, but one would hope that hospice nurse’s level of understanding would be somewhat greater.

Let’s say your (hospice pt) was born in Paris and 2 days prior to his death announces he would like to die there. Is your hospice agency going to fly him to Paris? If not, would you call that a bad death? Or (assuming his family did not have the financial where-with-all to fly him to Pairs) try getting him on to something more realistic and substantive?

Let’s say you have a pt who wants to be euthanized. Would you do it?

Let’s say your pt wants to emulate Christ and wear a crown of thorns and have blood trickling down his face from his scalp. Would you comply?

Few (as in- almost no) pt/fams understand dying process. Are you willing & able to assist them in deepening their understanding? Or will you merely hide behind the maxim: Whatever the pt wants… that’s good enough for me.

Also, when I speak of dying consciously as an ultimate goal that is an ideal, not situational.

I sometimes get the feeling that if I were to suggest that the ultimate goal for a major league pitcher is to pitch a no-hitter (an ideal) someone here would jump up and proclaim, “No, no! There are times when a pitcher’s “ultimate goal” is to have the batter hit a single.” (Situational.)

It is also apparent that many hospice nurses do not understand the concept of dying consciously; i.e. what it means, what it would look like, how it would be beneficial and in what context etc. Obviously, few (as in- almost no) pt/fams understand this. Should we then (since almost no pt/fams understand it) scratch it off our list of goals?

If a high school grad goes to see a counselor at a university, thinking he would like to enroll but has no idea how to go about it and announces, “I would just like to get in and do as well as I can until my money runs out.” But the counselor, because her experience, understanding and know-how are vastly greater, can see that the student’s grades & talent are sufficient to get some scholarships and ultimately graduate. But since the student’s level of understanding is quite low, should the counselor just keep her mouth shut and simply give the student what he wants… leaving him wallowing in his own level of misunderstanding?

Pt/fams don’t know what is possible… but hospice nurses should. The gist of your argument (zacsmimi) is that hospice nurses should just leave pt/fams at whatever level of ignorance they happen to be on. Your argument also suggests that most hospice nurse’s level of understanding of dying process is no greater than that of the general public.

On the latter count, there are times when I am in despair of the possibility that you may be right.

Here is an example of an ultimate achievement for a hospice nurse. While admitting a pt he whispers quietly, “When the time comes, I want you to give me an over-dose. Do you understand me?” But then, ultimately, the nurse is able to work with that pt/fam so effectively that the pt winds up crossing over, wide awake, in a state of pure bliss.

Before that could happen however, the nurse would have to understand that it is even possible. Then s/he would have to have some idea of how to get from point A to point B. And of course there are always those irksome details like, the hospice agency would be willing to give the nurse time to accomplish such a goal.

Michael

[leslie :-D]

it's frustrating to read the posts who endorse, "always what the pt wants".

it is because the pt does not want to deal w/their current reality, that death s/b as opaque and unaccountable as possible.

it is only when they have consciously tidied up loose ends, that hindsight supports what they truly want.

and an effective hospice nurse, knows this.

and still, it's disconcerting that many don't get this.

michael, i bow to your perseverence in upholding this truth.

i'm beat.

leslie

[Em1995]

Let's clarify this...we do, in fact, "do what the patient wants" when we work with the patient and family in facing the unresolved issues, unhealed relationships, whatever it is specific to our patient. And, that isn't in a "cookbook for hospice nurses". It takes listening, really listening, an acute awareness of our patient and his or her significant others, it takes our presence in the moment. Fortunately, my hospice agency gives me that time. They actually encourage it!

Hospice nursing is FAR more than mitigating symptoms with pharmaceuticals. It's looking and listening to what's spoken and many times to what's NOT said. As someone here said...it's opening yourself up to die with this patient and I know exactly what that means. A sad fact is that many patients are referred to us way too late...but, even then we can assist them in this process as best we can.

[leslie :-D]

good post, em.

i am specifically referring to those pts who would prefer to be snowed throughout the dying process, in attempts to shield themselves from further anguish.

or those pts who feel condemned to hell, refusing any/all interventions, as forthcoming punishment.

or those pts, who defer to their family's wishes, 'wanting' to keep the peace.

and it goes on.

these people need to accept their death, w/all of its inferred values, if it is to have any semblance of substance.

many times, these pts don't know what they want, until they've arrived there.

again, that hindsight thing. :)

no doubt, you get what i'm talking about.

leslie

[req_read]

Okay… now let’s get back to business.

I have noted, and often remarked, that the dying teach us how to live. However, that does not necessarily occur in a straight forward way. Just as in life, many of the lessons we learn are taught in reverse so-to-speak. By their actions and the results thus obtained, people can teach us what to do, or they might teach us what not to do.

When you see someone touch a hot stove and jerk his hand away with a scream you think, “Ah-ha! Touching hot stoves is a bad idea.” So that lesson is taught and learned, but in a negative way.

Many people watch their parent’s die while being aware of their parent’s peculiarities… or one might say- their “character flaws.” No one is perfect. I’m not… and my parents sure as heck weren’t. I see what my father is going through as he traverses his dying process and can see quite clearly how his “peculiarities” played into what he is going through now. In fact, I predicted (to my siblings) that he would go through what he is going through now before it came to pass (based on my study of dying process.)

All of which is to say…

A)If you understand dying process, plus B) you are familiar with a dying person’s life-style, attitudes and thinking patterns, you can C) predict, with a fair degree of accuracy, how that person will die.

Which, by the way, includes your Self.

If you understand dying process and if you understand your Self you can predict how you will die.

Now… one might well ask… why the h___ would anyone want to do that!?!?!?

Because, if you see it coming you can change it. If you can see it coming and don’t like what you see… change it.

Thus, dying teaches us how to live. It is a lot like some of those science fiction movies you see where someone travels into the future, finds it to be rather troublesome, then comes back to the present and frantically attempts to avert the coming calamity.

Well, that notion is not so far-fetched. If you know your Self (harder said than done of course) and understand dying process (few do) seeing into your future (seeing your own dying process) is no great trick.

So there are two prerequisites for improving one’s future; 1) understanding dying process and 2) understanding your Self.

Which underlines the value of studying dying process (and makes one wonder why we don’t) and points to why so many spiritual teachers throughout the course of history have advised us to “know thyself.”

Michael

[Em1995]

Micheal...I hear what you're saying and that's why I am very verbal about reaching out into the community with educational offerings re: hospice. It provides a vehicle to open the lines of communication and to encourage people to THINK and TALK about living and dying....now. And, who better to lead a discussion than a hospice nurse? I include our social workers when I plan these community events. I also reach out to the schools as kids do want to talk about dying and living, despite people telling me I "should spare them". That gets my blood boiling.We avoid and deny so much in this society. And, by this avoidance, how can people know themselves? Just a thought.