need to hear from hospice nurses

[minkydog]

I'm thinking of looking into hospice nursing. I've been a peds nurse for many years, but after nursing my father through his last illness & home-going I am drawn to the art of helping people die with dignity. Tell me about your work. What you like, the drawbacks, anything you think I need to know before trying this out. I've been with my current hospital a long time, so I don't want to just jump ship only to find out I hate this kind of work.

 

[Pea-n-Me]

I know nurses who've worked in hospice and they really love it. I've worked in cardiology for 20 years, but hospice is one of the areas I might have chosen had I not wound up in cards. Now that I've had my own cancer experience, however, I would not be able to do it (not now, anyway) - it would bring my own fears too close to home if you KWIM (it's often difficult even in cards, since we deal with end stage cardiac disease and see a lot of other things as well). A friend of mine at my hospital has done oncology nursing for many years. She just had BC herself and told me she's thinking of coming back to cards, evidently she feels the same way I do. Something to think about. Can you stay per-diem at your current job?

With all that said, I'm working with the oncology population in a different way. I'm running a meditation and journaling class at the support center I went to to help others undergoing treatment get through it. And I'm taking courses in complementary therapies (such as Reiki) to help bring those into the hospital I work in now. Lots of progress in this area in the last few years which is nice to see.

There's a lot of great work to be done in oncology if you love it. Good luck to you, I'm sure you'll be great having had your own experiences with your Dad.

 

[DawnCt1]

not what you want to hear but my thoughts. i am a nurse who could never consider going into hospice care. i had hospice for my mom and had terrific nurses and aides. they were all wonderful. mom and i took hospice with "our fingers crossed". we sort of felt that when her counts came back up she would resume chemo again and we'd say sorry "thanks but no thanks". in other words, even though the decision was made, we knew it was hers to reverse. in the end it was still very hard to let go. i don't think i could go to work on a daily basis and know that i couldn't look under a stone somewhere and find something that someone just hadn't thought of YET. i couldn't face death on a daily basis, go to the wakes and the funerals and the next week do it all again. GOD bless those people who can but i know that is not me.
dh's aunt died last week. she was hospitalized with infection, some cardiac issues and kidney failure. her options were antibiotics and dialysis. at 74 that would have meant dialysis 3 times a week. we went to visit her before she died. she was comfortable, pain free, LUCID, conversant but she chose "comfort measures only" and left the hospital the next day to go home on hospice. she told dh "i hope it doesn't take long". to me, i don't get it. it was almost akin to suicide. she HAD a choice. she didn't take it.

 

[nrsldy]

I have been an ER nurse for years. I have lost 3 family members to cancer. My mother had lung ca (1983), my daughter colon ca (1995) and my aunt melanoma. My aunt died last year. I never would of considered hospice nursing after my daughters death. But last year it seemed the right thing to do. I started working in hospice Jan of this year. Most of my patients are in long term care. So it makes since to provide comfort in thier last days. I do not look at my job as being an angel of death. We do have people discharged from our services because they get better or decide to be aggressive in their treatment. Our practice is not curative but palliative.
Good Luck in your choice. I can not see myself working in another field.

 

[minkydog]

not what you want to hear but my thoughts. i am a nurse who could never consider going into hospice care. i had hospice for my mom and had terrific nurses and aides. they were all wonderful. mom and i took hospice with "our fingers crossed". we sort of felt that when her counts came back up she would resume chemo again and we'd say sorry "thanks but no thanks". in other words, even though the decision was made, we knew it was hers to reverse. in the end it was still very hard to let go. i don't think i could go to work on a daily basis and know that i couldn't look under a stone somewhere and find something that someone just hadn't thought of YET. i couldn't face death on a daily basis, go to the wakes and the funerals and the next week do it all again. GOD bless those people who can but i know that is not me.
dh's aunt died last week. she was hospitalized with infection, some cardiac issues and kidney failure. her options were antibiotics and dialysis. at 74 that would have meant dialysis 3 times a week. we went to visit her before she died. she was comfortable, pain free, LUCID, conversant but she chose "comfort measures only" and left the hospital the next day to go home on hospice. she told dh "i hope it doesn't take long". to me, i don't get it. it was almost akin to suicide. she HAD a choice. she didn't take it.

Interesting. I feel the same way as your aunt. Just because there are invasive treatments doesn't mean they have to be used. I think in her shoes I would have chosen likewise. My DH & made our living wills last year and he was adamant that he not have his life prolonged artificially unless he had some hope of normal life. He has severe lung disease so the threat of death is always with us. We have talked at length about it and we are not afraid.Not everyone feels that way and for them, the full treatment at a hospital might give them the reassurance that everything possible is being done.

When my Dad died he wanted to pull out all the stops even though he had mesothelioma, which is 100% fatal. There is not curative treatment and darn little comfort. He had one lung removed and did fairly well until the other one filled up with cancer. He wheezed and coughed and couldn't sleep for a number of months. He lost 100lbs. Even then he refused to entertain the idea that he would die--he wouldn't set his affairs right or make a real will. When the doctor told him it was time to call hospice, he was crushed. I have never seen such frank denial.

Of course, he was very, very weak at that point and it was beginning to dawn on him that he was dying. So I was able to talk to him about end-of-life choices--do you want a vent, CPR, cardiac drugs & central lines, or do you want to just be painfree, have your family hold your hands and just go to sleep? He chose option B. I told him I would guarantee him that he would not die alone, gasping for air.

And about 2wks later he called me over and asked for something stronger for pain(I don't know how he could stand the pain, it was so severe). He asked if we could hook up the IV with morphine and let him get some "rest"--it was his way of saying "I'm ready to go." I promised him I could make him painfree and that I would personally stand in the gap for him to see that he had excellent care. With that he nodded, closed his eyes and made himself ready to go. They hooked him up to a pain-pump and he drifted off to sleep. For 36hrs my sister & I never left his side, but slept in shifts. I knew the end was very near, but I wasn't afraid. It was right and he was at peace. We stayed the course and he died painfree, with a hand-knitted blanket over his feet, with his long-time GF & 2 daughters at his side and a big full moon shining through the window. More than he had hoped for.

It was a life-changing experience. I have very rarely witnessed a death so peaceful. It was as if the universe opened it's arms and welcomed him in. When I go I hope someone will recognize that it's okay to stop treatment and let go. I'm not afraid to die. I'm only afraid to hurt.

 

[clarabelle]

i don't get it. it was almost akin to suicide. she HAD a choice. she didn't take it.

She did make a choice. I think it is a choice that I would hope I would make.
As you Probably know Dialysis isn't any fun. They don't feel well and have to go though all that stuff 3 times a week.
She got to die on her own terms still feeling comfortable and lucid.
In America we spend more money on "end of life" care than any other country. I think there is a great dignity and peace in being allowed to go on your own terms. If she was a religious person maybe she felt like she was going on to something better. It makes perfect sense to me.
I am sorry it was such a painful experience for you.

 

[shy little mouse]

Minky, I hate to hijack your thread, because I find it very interesting. I too, would like to do hospice nursing, but I can't take the pay cut. I have looked into it, and where I live, it would be greater than $5 per hour, because my hospital pays so well.

Dawn, I work with a dialysis population, and I applaud your aunt. I realize you are a nurse too, but perhaps you don't understand how much the quality of life suffers when you choose dialysis. Even the young and healthy ones (in their 20's-40's) are pretty sick people and have lost a great deal of life hooked to the machine. A lot of times, the renal docs push for dialysis or give a rosy picture of it to patients and families in crisis (ARF). They present it as treatment and an option for living. Most of the time, these patients and families jump at it, because they are in a crisis situation and it is do or die. Most do not think about the ramifications. Not only are you locked into dialysis 3 days a week, you also suffer the side affects of dialysis, such as: increased infections (as a population they are notorious for MRSA/VRE/C-diff), hypo/hyper-tension when your weights are adjusted, increased frequency of hospitilization, anemia, and weakness to the point that most in their 70's-80's are put into nursing homes because they just cannot function at home anymore. If I was in my 70's (or my loved one was) there is NO way I would choose dialysis. In fact, when my grandfather passed after a 6week ICU stay in 1995, I advocated for him not to be started when he went into kidney failure. Most of the other family members were only thinking of keeping him alive, and not what that meant in the end. As for suicide, no, she chose to die with dignity on her terms. Very few dialysis patients end up with that option, after they have suffered for a few years on the machine. Advocating for patients and families means providing them with ALL of the information, letting them make their decision, and then respecting their free will to choose, even if it is not what we would choose. Respect your aunt's wishes.

 

[Missy Mouse]

I'm thinking of looking into hospice nursing. I've been a peds nurse for many years, but after nursing my father through his last illness & home-going I am drawn to the art of helping people die with dignity. Tell me about your work. What you like, the drawbacks, anything you think I need to know before trying this out. I've been with my current hospital a long time, so I don't want to just jump ship only to find out I hate this kind of work.

Hi Minky, you are considering a fantastic field. I work at a long-term acute care facility and we specialize in palliative therapy and hospice. A lot of people who come here are end stage and in denial. We just had a 40-year-old woman with end-stage ALS terminally wean off a vent, but it took her one year to decide to become care and comfort. She died within 30 minutes, with all of the nurses, aids, and her family in the room, holding her hands. She requested to go to sleep the night before and not wake up the day of the wean. She ended up waking up that day anyway, to look at us and say, "I love you" before she slipped into sleep and passed. It takes a very special kind of nurse to work in hospice, to know that you don't have control over this patient's life; that they are choosing this as their time to go no matter what you think they should do. If they choose hospice over treating something 85% curable, you do not talk them out of that choice, you hold their hand and just listen. You will have families that do not agree with their family member's choices, who are still in denial and haven't moved on to anticipatory grieving. You will experience patients in which you are their only visitor. You have to be able to love unconditionally and still be able to separate yourself in knowing you cannot save them, you are helping them go, usually within six months. Six months can be a long time to form some deep bonds. You will cry and that's okay. You will definitely be touched, and find yourself staying in contact with families. There is something so powerful in helping someone die with dignity. Restoring that kind of control to a dying patient is one of the most wonderful things you can ever do. If you feel hospice nursing is a passion, I would recommend it as a very fulfilling career. Every single person is going to die one day, whether it's from a disease or natural causes. No matter what the circumstance, we all have a right to the most compassionate and empowering quality of care.

 

[Missy Mouse]

Minky, I hate to hijack your thread, because I find it very interesting. I too, would like to do hospice nursing, but I can't take the pay cut. I have looked into it, and where I live, it would be greater than $5 per hour, because my hospital pays so well.

Dawn, I work with a dialysis population, and I applaud your aunt. I realize you are a nurse too, but perhaps you don't understand how much the quality of life suffers when you choose dialysis. Even the young and healthy ones (in their 20's-40's) are pretty sick people and have lost a great deal of life hooked to the machine. A lot of times, the renal docs push for dialysis or give a rosy picture of it to patients and families in crisis (ARF). They present it as treatment and an option for living. Most of the time, these patients and families jump at it, because they are in a crisis situation and it is do or die. Most do not think about the ramifications. Not only are you locked into dialysis 3 days a week, you also suffer the side affects of dialysis, such as: increased infections (as a population they are notorious for MRSA/VRE/C-diff), hypo/hyper-tension when your weights are adjusted, increased frequency of hospitilization, anemia, and weakness to the point that most in their 70's-80's are put into nursing homes because they just cannot function at home anymore. If I was in my 70's (or my loved one was) there is NO way I would choose dialysis. In fact, when my grandfather passed after a 6week ICU stay in 1995, I advocated for him not to be started when he went into kidney failure. Most of the other family members were only thinking of keeping him alive, and not what that meant in the end. As for suicide, no, she chose to die with dignity on her terms. Very few dialysis patients end up with that option, after they have suffered for a few years on the machine. Advocating for patients and families means providing them with ALL of the information, letting them make their decision, and then respecting their free will to choose, even if it is not what we would choose. Respect your aunt's wishes.

I was just writing about my experience in long-term acute care, where we get both sides of the fence. We have several patients in their 70s and 80s on dialysis, with stage four pressure ulcers, barely conscious on ventilators, and because they have no healthcare proxy and can't speak for themselves the families push to proceed with all life support measures. Nevermind the rampant infection rate. No amounts of vanco will cure their infections because they are so immunocompromised. It's the saddest and most derogatory thing I've ever seen.

 

[Pea-n-Me]

It takes a very special kind of nurse to work in hospice, to know that you don't have control over this patient's life; that they are choosing this as their time to go no matter what you think they should do. If they choose hospice over treating something 85% curable, you do not talk them out of that choice, you hold their hand and just listen.

That's very interesting. Does that mean that your role is not to educate about the disease the person has (from a curative standpoint); that you assume that the person is completely educated in their choices before they decide they don't want to do any more? If they decide it's their time to go, your role is to support that choice unconditionally?

I suppose that in acute care, we do the same type thing, to a point. But our role would be to make sure they fully see both sides of the coin, and then make their choices. IME, most times it's pretty late in the game before they convey there's no hope left, but it seems to be what patients usually want, unless they've been chronically ill for a long time. But again, that's cardiology, not oncology, so it could be different.

 

[Missy Mouse]

That's very interesting. Does that mean that your role is not to educate about the disease the person has (from a curative standpoint); that you assume that the person is completely educated in their choices before they decide they don't want to do any more? If they decide it's their time to go, your role is to support that choice unconditionally?

I suppose that in acute care, we do the same type thing, to a point. But our role would be to make sure they fully see both sides of the coin, and then make their choices. IME, most times it's pretty late in the game before they convey there's no hope left, but it seems to be what patients usually want, unless they've been chronically ill for a long time. But again, that's cardiology, not oncology, so it could be different.

Oh no, it is your right and your responsibility to inform the patient of their options within your scope of practice. It must be duly noted that treatment options were discussed, what was discussed, so on so forth before a patient is referred to hospice. Even once in hospice care options are discussed to make sure this is the patient's decision, and that there isn't an underlying reason (such as the pt not wanting to be a burden to family members). Usually a pt is not referred to hospice unless options have been exhausted. There is a set of criteria and evaluation procedures that are followed first.