ALS info

[saribeth]

Hi kids...From what I can gather death can come rather abruptly with ALS and at times does not follow the "typical" s/sx of dying...Is that accurate? Any insight would be most appreciative...thanks so much!

[leslie :-D]

advance directives are so crucially important in this population.

knowing how steadily one can deteriorate, and esp where it affects most pts communication/speech, it is imperative to understand their wishes in advance.

common issues towards eol:

- do they want to be vented? and how will this impact quality of care and quality of life?

- artificial feeding? can they even tolerate these extra fluids?

- managing acute depression/anxiety/behavorial episodes (difficult to differentiate between depression/anxiety/"pseudobulbar affect". pseudobulbar occurs when there is an abrupt onset of laughing or crying, almost always untriggered. in the absence of effective communication/speech, assessing these seemingly mental breakdowns, can be challenging at best. sedatives indicated.

- relentless insomonia is a major problem in the last month. again, exacerbated by acute anxiety, dyspnea/sob.

- unaddressed pain. doctors do not seem very knowledgeable in als and many hesitate in prescribing liberal doses of opioids. get neuro consult. or WHO guidelines.

any issues you address in eol, are ultimately r/t the young age in which they struggle, then die.

it's imperative to address all psychosocial issues r/t the losses these pts suffer.

als does not affect one's intellectual capacities and so, are very attuned to vital functions destroyed by this disease.

those implications alone, necessitate vigilant and sensitive nsg skills.

hoping some of these insights helped to answer your questions?

leslie

[kerrioutlaw]

Hi Yes this is true I have taken care of several ALS patients and although they made progressive declines most did not go into the actual dying phase. We had one just last week that was declining but definately not actively dying that suffered respiratory distress and just passed away during the evening family seems to have a harder time with this as there seems to be less forewarning.

[doodlemom]

Hi Yes this is true I have taken care of several ALS patients and although they made progressive declines most did not go into the actual dying phase. We had one just last week that was declining but definately not actively dying that suffered respiratory distress and just passed away during the evening family seems to have a harder time with this as there seems to be less forewarning.

This has been my experience, as well. I've only had one ALS pt that decided against tube feeding and she is the only ALS pt I've had that did not die from acute respiratory distress. Her illness was much more peaceful and was a more "typical" death. I really feel for these patients and wish there was more end of life education earlier in the disease process. I think more of these patients would decide against tube feeding if there was.

[Allow Mystery]

I had an ALS patient, without the feeding tube, and she passed with

respiratory distress, although I didn't consider to be acute, she was on oxygen and neb txs for some time. I didn't do the death visit, but talking to the family afterwards, her death was quick, and they did not

perceive she died in total agony.

I understand why feeding tubes are chosen by some ALS patients, many are young and have been lead to believe that a cure may be forthcoming; it's an individual choice that we all have.

[doodlemom]

I had an ALS patient, without the feeding tube, and she passed with

respiratory distress, although I didn't consider to be acute, she was on oxygen and neb txs for some time. I didn't do the death visit, but talking to the family afterwards, her death was quick, and they did not

perceive she died in total agony.

I understand why feeding tubes are chosen by some ALS patients, many are young and have been lead to believe that a cure may be forthcoming; it's an individual choice that we all have.

Oh - I totally agree - and the majority of them are young. I don't judge them; I just think that the neurologists that treat them could do a better job of education.

[Allow Mystery]

Right on, doodlemom, but who takes the time to educate anymore,

and are the patients/families open to accept the education if given?kind of the cat chasing the tail, around and around she goes; but thanks to good nurses like yourself, you make do with what your left.

Take care!