Pathophys of End Stage Disease?

[missninaRN]

By way of introduction, I've been a nurse for 18 months; I was in Med Surg before starting in Hospice 2 weeks ago. I'm still on orientation but am starting to go out on my own to see some of the patients.

One area that has not been covered by my preceptor is patient teaching on what to expect as disease progresses. Because the majority of my pt's deaths at the hospital were due to acute illness/injury, I didn't see a lot of end stage disease.

I'm looking for some resources so that I can study up on what happens when treatment stops and the disease process is allowed to play out. Does anybody know of websites or books that would help me to prepare my patients and their families?

By the way-I love hospice so far. Although it means getting up early 5 days a week instead of 3, the days are shorter, I get to see the sky rather than be trapped inside a hospital for 12+ hours, and I actually spend time with my patients! I've eaten lunch while sitting (!), had time to pee, and managed to drink 8 glasses of water every day for the past 2 weeks. A-m-a-z-i-n-g.

Thanks for any ideas you can share with me. And advice for a hospice newbie is welcome as well.

[tewdles, RN]

Welcome to hospice! You will get lots of good information in this forum. People will provide links to excellent articles that will help you to improve your practice. I found several books that helped me discover my hospice "voice", NURSING CARE AT THE END OF LIFE Palliative Care for Patients and Families by Zerwekh; TERMINAL ILLNESS A guide to Nursing Care by Kemp; and PAIN MANAGEMENT AT THE END OF LIFE Bridging the Gap Between Knowledge & Practice from the Hospice Foundation of America. One of the things that I appreciated about these books is that they address spiritual and cultural issues very directly. In terms of preparing patients and families, the booklet "Gone From My Sight" is very helpful but not the only resource. That booklet is inexpensive enough that many hospices give a copy to every family. Most families whom I know have received this booklet felt that it was helpful to them during their loved one's decline. You should read that booklet and any other pamphlets or info that you find designed for families. It will help you discover your comfort areas in having what are considered (outside of hospice) "difficult discussions".

About the death of patients...in general, people die the same way. Our systems shut down and we take our last breaths. In hospice, we "allow" that to happen, in the acute setting we fight every "step". You will get more comfortable as you go along. When you research death by disease just research the disease. You can get useful information from any medical site in that respect. You don't have to worry about the hospice care while doing that research because the hospice care will always center on palliation of symptoms, comfort, dignity, etc. You are correct if you are concerned that your symptom focus may be different for the COPD patient than they will be for a Pancreatic Cancer patient, but remember that you are not alone in managing your case group. The other nurses, the physician, the pharmacist, etc are all on the same team and WILL help you to cover all the bases in providing for a "good death" for your patient and family. The longer you work in this field the more comfortable and conversant you become with successful strategies and modalities, just like in the ICU or other nursing specialty.

I am jealous that you "have time to pee", that is sometimes problematic when travelling from home to home and I have wondered about the feasibility of a leg bag during working hours. LOL

[Werblessed]

Tewdles, you are too funny! Re: time to pee...I feel like a criminal scoping out McDonalds and Convenience stores between visits just to use their restroom but rarely buying anything! It is our lot in life, I suppose (I usually hope that they cut me some slack when they see my RN id badge).

The resources you listed are excellent reads and I agree that MissninaRN will get most of her education from the IDT. Most Hospice Physician's/Medical Directors are incredible teachers to new staff and are happy to share their knowledge about end-stage pathophys of various diseases. This board is also an excellent resource as we have many seasoned and well-versed nurses willing and able to give a considered opinion on what you may be facing. I think one of the most important (and first!) things I learned upon entering this specialty field was the saying, "People die the way they lived". I remember thinking, "Huh....wonder what that means?" Well, it didn't take very long to understand exactly what that means and boy, is it true! The patients I used to be most concerned about were the ones who were absolute control freaks in their normal lives or who fostered a high level of anxiety and/or friction amongst their inner circle of family/friends. They almost always died what we usually would consider a 'bad death'. What does that look like? Instead of progressing peacefully to what I term a 'turned-in place inside yourself' where people do the work they need to let go when they are ready, these unfortunate patients struggle and fight to keep away from going to that place. But they MUST get there eventually and it is so horrible to watch a dying patient struggle against the inevitable of what I perceive is facing absolute Truth (and I see that as God) without any excuses, any justifications...not so much 'judgement' but seeing your life without the rose-colored spectacles on. I've only had a handful or two of these patients and I have to pray and breathe and accept that this was their journey and respect it for what it is. And we work our tails off to manage symptoms but when they are more spiritually distressed/distraught it is very difficult, if not impossible, to provide optimal comfort as we just don't have any medications to help this non-physiological angst.

I'm sorry if I got a bit off-topic...as you can see, these cases tend to stay with me. I carefully tuck them away in a very tender place in my heart and remember them and their families when I pray.

[Ginapixi, BSN, RN]

REALLY? 8 glasses of water and time to pee?? i want to work where she does!

i hope you will still like hospice when the regular days set in! and there were enough good tips on Pathophys above...

peace!

[missninaRN]

REALLY? 8 glasses of water and time to pee?? i want to work where she does!

i hope you will still like hospice when the regular days set in! and there were enough good tips on Pathophys above...

peace!

I know. It's amazing to me too. I keep a couple of bottles of water in the car and drink frequently while I'm driving and have already located the cleanest gas stations/travel stop shops in the towns where I will be working.

Thanks for the tips, everyone. I will definitely look into the resources everyone suggested.