[mjamesRN]

I've been in Hospice nursing for just under a year now and find the most difficult patients, physically and emotionally, are ALS (Amyotropic Lateral Sclerosis or Lou Gehrigs Disease or Motor Neuron Degeneration) patients. The common prognosis from diagnosis is 5 years. People know from the beginning that it is terminal. They are faced with having their entire world close in on them, becoming completely paralyzed with loss of communication and respiratory ability but their minds remain active. I would like to hear any comments, suggestions, stories etc...on how other hospice nurses deal with this frightening disease process in their patients who have it.

[Angelica]

I have also been with Hospice for just under a year. I have had only one ALS pt, but it was very difficult. She had a very strong, independent spirit, and was so devastated by the loss of function (as anyone would be). She was on service for about five months, and I never really felt like I was able to do anything to relieve her suffering. I'm not talking about physical pain, but rather spiritual and psychological suffering. The last time I saw her we had a very good visit. She was stable, still eating and drinking, still able to use her upper extremities, able to talk, no apparent respiratory distress. Two days later she was dead. I was in shock.

I would be interested to hear from others about their ALS pts and any suggestions they may have.

[doodlemom]

I have taken care of 3 ALS patients and have found them to be the most heart wrenching. We were fairly certain that 2 of my patients committed suicide with their family's help. The third one died of respiratory distress, which we treated fairly well with roxanol and ativan. She was being tube fed and probably would have had a better death if she had just stopped eating. It's very difficult because you know these patient are cognitively intact and are very aware of everything that is happenning to them. Only 1 of the 3 was able to talk about her feelings. That made it easier for me to be able to discuss symptom management options. All 3 of them used alternative communication devices that they had obtained from a nearby hospital that had a very big ALS program. All of them had lost the ability to speak and had g-tubes. It is surprising that your patient was so high functioning before her death. I would be suspicious that she had committed suicide - but admittedly don't know the whole case. The one patient that I had who talked abut her feelings had talked very candidly with me about suicide - although she knew all the right answers when having a psychosocial assessment done by the social worker. I just continued to give her and her husband support and affirmed my dedication to keeping her comfortable at end of life. She and her husband had been in contact with a lot of other ALS patients on various newsgroups and support groups. Most of these patients have researched the disease to death and know very well what their demise will be. Apparently, there is a high suicide rate with ALS patients...and it is understandable. I try to put myself in that place and think that suicide would be in the back of my head at all times. None the less, we are doing hospice work and the focus is on comfort. I think that a lot of the time these patients have poor symptom management at end of life. Their respiratory distress can be profound. If your patient's are able to talk about their fears, then I think it is easier on you (and them). If ever I have another ALS patient on Hospice, I will try to explore that fear with them and continue to give them options of symptom management.

Anyway, just my 2 cents...Gianine

[renerian]

We see alot of it in home health as well in the Medicaid waiver programs. People who are not yet ready to give up hope.

It is extremely hard for me as well.

renerian

[Angelica]

My pt had spoken of suicide, and we suspected that she might have acted on that. I agree that it would be something I would consider as well.

[Ross1]

I served as a social worker for 5 ALS patients through the years. 2 died of natural causes and 1 died from suicide. (The other two were still alive at the time I resigned from the job due to spousal job relcation). I've found patients with ALS to professionally challenging but at the same time professionally rewarding. It is a horrible disease with such dramatic bio-psycho-social impact and there is just so much work for nurse, social worker, PT, OT, ST to do.

It can be very emotionally draining at times. All of my clients had full communication ability and had a full understanding of their diagnosis and prognosis. We did lots of great therapy and while I knew that I could not cure them, I took great comfort in knowing that I, along with my fellow health care team members, at least did something to make the lives of our ALS patients a little more comfortable during their remaining days.

And while not the norm in hospice, rehab services are provided when indicated. The thing that always stood out the most with regards to rehab services was the incredible value of OT in promoting improved comfort, adapation, etc as the client continued to decline.