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.

[req_read]

finn…

I’m having to make some guesses as to the particulars of your pt/fam’s situation… it sounds like the one dying is the one who has been in control?

Relationships between couples are, very often, not “adult-to-adult”… not as equals… not horizontal, but vertical in nature. The “leader” likes this arrangement because it gives him/her a sense of control and “better than” status. It’s a short-term “high,” but has a variety of negative consequences. First, the leader is always alone… has no true partner… no adult-to-adult relationship. It’s lonely at the top. Then, when the leader dies, there is a power, or leadership vacuum… which causes all sorts of mayhem in the rest of the family system. And of course the dying leader discovers that all the “highs” of seeming to be in control were false. It was just a form of self-delusion all along. So death teaches us who we are, and it’s a real bummer to discover that “who we are” is someone who is severely self-deluded. And when that realization comes crashing down it’s even worse to discover you have no adult to adult relationship to fall back on. Oops!

My wife & I resided across the street from our POA for about 5 years and our relationship grew over that time. He’s sort of scary looking… not anyone you would want to start trouble with. At first he thought I was a real screwball and bigot. He would see me staring at him kind of funny, not responding to his subtle gestures. Then I introduced myself and told him I’m legally blind… I’m not a jerk, I just can’t see well. One day I asked him if he was a foreman at his job… because he acts like one… a natural born foreman… that’s what he is. He has not had an easy life. He has 3 kids… the oldest 15… who had a brain tumor (so far in remission.) We have been on a few hunting & camping trips together, and when you do that you get to know someone pretty well. We have talked for many hours about all the things I have written about. He thinks about things, then responds with well thought out questions and comments. He is bright, loyal, makes good decisions most of the time, a doting family man and intellectually astute enough to ponder deep philosophical and existential issues. He is not afraid to talk about death and dying, even to his children. It’s not easy to talk to your teenage son about the fact that he may die. It would be nice if he were in healthcare and understood that whole system, but I have explained a lot of it to him, including all the details of how Aunt Kay died… plus he’s struggled with the healthcare system himself. Since we moved we’re about 2,000 miles apart now, but we talk on the phone regularly.

The lawyer, on the other hand, said if he were my POA for healthcare he had no intention of honoring my wishes, and further, had no interest in hearing my point of view. And being a nurse, I have an accumulated mistrust of doctors. It is a bias, I know, but there it is… at least I know that I have it.

A savvy hospice nurse? Personally, I don’t know any. Remember, I quit traditional “nursing” in 1998 and work out of a small home office. This forum is my only connection to nurses any more… other than my wife of course.

Michael

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PS…

finn… I forgot to address one of your questions; i.e. what should you say if your pt breaks and presents an opening… drops his mask?

Answer: I don’t know… but you will. It’s situational. You will be there, I won’t. You’ll know.

Michael

[finn11707]

The family I referred to are all seemingly strong. Patient and husband

vie for control in every conversation I have observed. The wife (patient) is a well educated, career woman. Even towards retirement age, she chose a second 'fun' career which she worked at until her recent diagnosis. I cannot give more details as it is a current assignment. Husband is working full time; is a strong leader in the community and in a 'power/control' capacity in his career. He is self employed and is her evening/night caregiver. He is 'not able' to take off these final weeks of his wife's life. Daughter is an intelligent, capable daytime caregiver. It might be easier if there were a true 'control' person, but I think, and the daughter states this also, that they have vied for power and control all their married life which has been some 35-40 years. In fact, she states this is a family style of interaction--hotly debating differences of opinions. I have recently received calls from the husband asking that the MD and I 'make her understand that she is dying'. She does not want to speak directly about dying, but is engaging in conversation about what her life has meant to her; is making funeral arrangements; sorting through personal belongings...doing the work basically. True, she is ambivalent about use of Morphine and ativan; prefering to try using meditation, relaxation, imagery, distraction first and allowing herself to progress to high pain levels, at times (mostly when her husband is home caring for her...I believe, to more strongly engage her husband's attention...)

You are right, approaching death will provide the opportunity for growth and understanding. She knows clearly she has the power as the one who is dying, and will, I believe, aquiesce to the process, even if her husband cannot walk with her.

Sounds like a great friend/DPA.

[jadelee]

Wow, i was looking to post about my dilemma, and the postings here as so eloquent, and emotionally intelligient.

I have been a nurse for eight years, and have always liiked pall care in my general nursing, but have only started it as a speciality a year ago in hospice at home. Problem is a i can be very focused and clinically competent or very spaced out from day to day. NOT good when you practice on your own. so was enouraged to leave, work on it and come back.

so i went to small (15 bed) place, but i am not settling in well.

I am looking for a new job, but today my manager (who has been unhelpful and unwelcoming) asked me to do more buddy shifts.

i don't want to do them, cause i don';t want to stay.

i am not sure my concerns would be validated if i expressed them, should i just pretend the problem is all me when other people have intuiated that 'things could be done better' like i feel.

Should i give speciifc examples to the forum here ie am just whinger?

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finn…

Hm-m-m… very interesting dynamic.

Here’s my best guess…

We get into ruts… paths that are not so very divergent… at first anyway… but over time the distance between the two paths keeps getting farther apart. Take a pair of scissors for example. When you open them at a slight angle, near the fulcrum the 2 blades are still pretty close together… but out at the tips (over time so-to-speak) they are farther apart. Then along comes death and the partners start looking at the paths they have chosen and some regrets start seeping in. Yes… a competitive relationships spurs each onto higher achievement… but what about tenderness? Ah yes… what about the tenderness?

My parents had a somewhat similar relationship in that they argued almost constantly. They would come to visit and then sit an argue… I dreaded being around them. Then Mom died suddenly in the operating room. I was not there (of course) but my brother said when the doc came out to inform the family the first words out of my dad’s mouth were, “Oh my God! And I was so mean to her.” But then he quickly recovered himself and never said anything close to that again for the rest of his life… quite the opposite. He spent the rest of his life telling anyone who would listen how wonderful she was and how he had always worshipped her. In death, my mother suddenly became “Little Sweet.” In effect, my dad spent the rest of his life desperately attempting to convince everyone (mostly himself) that their relationship had been something entirely different than it was.

Perhaps your pt’s husband would like you to “make her understand” she is dying so that she will acquiesce… stop competing… because he won’t until she does… like two buck deer whose antlers have become locked together while fighting and now they can’t get apart. However, either one of your couple could CHOOSE to let go at any time. That would be the break.

If the pt breaks first, maybe it won’t be to her husband… maybe it would be to a “safe” 3rd party… such as yourself for example. You can’t “make her” do anything of course, but you can sprinkle some cookie crumbs leading towards a different path. Maybe she’ll pick them up… maybe not. Maybe he will spend the rest of his life, like my father, trying to re-write history.

What I wonder is… what are her post death expectations? I nearly always got around to asking that question… because it always seems to have such a bearing on the process. But it has to be asked at the right moment in the right way. If you sense a moment of softening… a potential for tender human connection… when she and you are alone… you might ask something like, “I’m curious, but what are your expectations?” That leaves her plenty of wiggle room to not answer if she chooses, but it’s like putting out a cookie. “Here it is, if you want it… if you don’t, that’s fine too.”

Just stay ten thousand miles away from proselytizing. If, when I am on my deathbed, someone asks me, “Have you met Jesus?” The next thing they will see is the muzzle of my pistol and me asking, “Would you like to?”

What we have to offer is our “being”… our human-ness… a little tenderness. It sounds like your couple do not have a great deal of that in their relationship. They had competition and lots of social “success,” but working with the dying has a habit of fooling around with our definition of “success.”

Also, be alert for your pt putting out a cookie of her own… for you to pick up… during some quiet moment of potential human connection… some subtle turning towards tenderness.

When training a horse you have to watch very closely for some subtle indication that they are “getting it.” A trainer I used to know said that when a horse licks his lips, that is a sign he’s thinking. In that sense, watch for your pt to lick her lips.

Michael

[finn11707]

jadelee---post as your heart leads. If you need to write here to get things off you chest, do so. True, this particular topic has carried us beyond the angst that goes with the usual workaday frustrations. But it isn't that we don't have or understand those too. Welcome!

[finn11707]

Michael. I was never too comfortable around horses after being thrown as a child and getting a nasty concussion. But I can certainly benefit from the analogy and watch for lip licking and do some of my own.

No, I am not one who raises the topic of Jesus at the bedside. I had my fill of good intentioned proselytizing in my former days...

Funny you should comment on that as this woman often 'refers' to her connection with God. She and her mom share such talks each week during their visits together. I sense it is vaguely out of sync with who she is, when she comments about it.

Then of course, there is that comment dad made when I began hospice work... "you are in a work where you can do so much good...." He didn't mean the kind I am doing, of course...

I believe my couple will sort it out. She is the one who will teach him about allowing the light of awareness in and I do have a gut feeling she will do it grandly. He is in a profession that makes him more guarded against his own emotional awareness and growth of this depth. Oddly, as it is one the general population views as intuitive and wise. But that is so often only a public face.

[jadelee]

Thank you.

On the job, i can be really emotionally present and emphatic (feedback from others) and can handle major bleeds and liver failures, etc or mental health crisis on my own (like my best friend self harming and I bandaged her up like it was 'normal') . but i although have been a nurse for eight years, i still sometimes practice at a junior level with other staff around and can lose my confidence and patient advocacy skills so easily. I also have put any effort into continuing education or actaully doing anything about my weakness (but i can spot them!)

:heartbeatI am not assertive, like the other night when the "ward routine" is too turn and wash mid shift, but stood there while they did this for a patient, who should have had " breakthru" and was mildly to mod distressed. MY Normal practice is assess, need for breakthru BEFORE interventions, but i let that go out window.

i think maybe it's related to guillt complex and low self esteem. (start my counselling next week). My patients are going to suffer, or i could lose my registration from my 'isssues' (one bout of depression but no current clinical or medical problem. I don't want to burn out thru beating myself on my bad days.

I think my first point is to go with my gut feeling that this ward is nt good for me, and this hospital just certiifed as competent at cpr (for relatives only in my case) without actually assessing us. The ward has only been open two years, staffed from a place that was shut down, so i do feel for the staff there now). I am applying for radiation oncology and looking at post graduate study to help make and stand by clinical decisions.

Thank you for any suggestions.

jadelee---post as your heart leads. If you need to write here to get things off you chest, do so. True, this particular topic has carried us beyond the angst that goes with the usual workaday frustrations. But it isn't that we don't have or understand those too. Welcome!

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finn…

Intriguing case… yours. And a good one for illustrating the breadth and depth of factors that play into how a person dies… and whether we might consider that death to be a “good death”… or not so “good.” It even illustrates that when we consider applying the label “good” (or not) we must also consider how an individual’s death is likely to impact surviving family members… because a death that is “good” for the dying one may be almost inversely difficult for the surviving one.

It is good to hear that your gut feeling is your pt will do well… and I do not doubt it. After the fact however, your bereavement person may have his/her hands full with the husband.

Michael

[finn11707]

Michael-

My gut feeling is the bereavement person will be declined by the husband, but very appreciated by the daughter. His profession perhaps obstructs awareness of his need. Of course, at some point, it will hit him and he will work at it then in his own way. Currently, the daughter and husband are angry with the patient and the patient is angry with them. Husband is is obstructing his wife's wish to pass on now some of her personal belongings to specific family members. He states it is his community property and he will take care of things when he does not need them any more. He also states everyone would probably rather things were sold and the $$$ given to them instead. Eek! I am staying out of this. He will have big karma payback, I fear. Oddly, the daughter is also supportive of the husband's stance, believing it would be too much to deal with mom's wish.

Even with all this upheaval, my last visit to her, she was quite a bit more at peace and the pain episodes each evening (on the husband's shift) had stopped. Isn't it a relief when the importance of the material falls away to allow the more important internal work. She is a formidably strong woman. I am sure she was not easy to live with. Still, her internal awakening is beginning and it will be awesome to behold the transformation process, I believe.

[req_read]

finn…

If I were in your shoes (and thankfully I am not) I would focus more on the pt and less on the husband & daughter. “Life” will undoubtedly provide them with what they need… whether they like it or not… but the hospice nurse’s ally (death) just might open your pt up… just enough… for a burst of growth. Which is what dying is all about.

Michael

[finn11707]

Yes, of course you are right. Focus on her. This is her finale.

Thank you Michael.