Question about dyspnea

[sukichaz]

Hi,

First thing, I admit I am not a hospice nurse. I'm a nurse practitioner and I'm trying to help my 82 year old mother and 85 year old father, and I would appreciate some feedback from you. I don't know any nurses who do hospice that I could call up to sound them out, so I'll try here. . . I have a few questions at the end of my post.

My mom has metastatic breast cancer & she also has heart failure. They recently started with hospice services--it was what one sister & I proposed. They live about 2 hrs. from me but I make it down a few X/wk.

A paragraph of hx--at 62 had lumpectomy & radiation, at 73 had ICU/on vent X 1 wk, more than 1000cc pleural effusion drained & she did great--discharged to home & resumed usual ADLs, but it was lung mets--had lite chemo and remained active & healthy enough. At 80 had pleural & pericardial centesis and after 3 weeks in hosp, rebounded to better than her old baseline. 2 times now we have thought she was not going to survive, but she is like the cat with 9 lives.

This time, a tumor shows up in upper neck/chest in November, on CT scan, when she developed dysphagia & voice cord paralysis. Since November she is only able to take fluids and carefully so as not to choke. My sibs & I started dealing with anticipatory grieving, but she is not ready to give up. She had radiation and then as many chemos as she could manage when her CBC permitted. She is a very plucky woman. We asked for a hospice referral a few wks. ago when she was in hospital & had pleural fluid drained; started continuous O2 via nasal prongs. Now she's home on O2, pretty much maintaining her weight, wants to eat her 1-1/2 meals a day she can manage.

I have cared for dying patients in acute care settings but with no hospice experience I am puzzled because she is not cachectic, apathetic or wanting to sleep all the time. She is not obtunded, listens to NPR and watches TV all day and knows more about current events than I do. She isn't doing housework any more but it's due to dyspnea.

It may be that she has more time left than we thought. She wants to maintain a hopeful attitude & talk about dying upsets her. My Dad is taking one day at a time. But he is puzzled because the hospice visitors keep asking her what she is doing about her pain--she has never had a pain issue.

She IS having dyspnea at rest and when I saw her 2 days ago her resp rate was 32. All she is on is Lasix. I was uneasy but I went home & tried not to worry becz the hospice nurse was to visit the next day.

Today I talked to my Dad--85 years old but still teaches science in secondary school as a sub teacher--both my parents are very sharp and very independent. He is having a hard time understanding why they seem so concerned about pain, and not at all concerned with her struggling to breathe.

Possibly her heart failure meds need adjusting. Because she had some PND last night, she was very tired today. I thought her cardiologist should see her, but she was too tired out today for Dad to consider taking her anywhere.

Questions:

1--Is there anything like a nursing care plan to cover symptom relief?

2--Is this some sort of euthanasia, to ignore dyspnea? (the nurse who visited listened to her heart, Dad said, and then spent the rest of the visit chatting and talking about herself. They learned she has a son going to camp and she is a single mother. I don't think they especially enjoyed this visit. This conversation with a woman who can barely talk in a whisper and for no more than a few sentences at a time(her voice will never come back for however long she has to live).

3--I called the nurse coordinator to ask her if the pleural effusion were to develop to a significant extent & Mom was still status quo, if it would be possible for her to have a therapeutic pleural tap. She got very testy with me and said that was an aggressive procedure and hospice was not about aggressive procedures. I guess we are living in two different realities. I don't know if I am making a mistake in thinking this would be a palliative measure. My mom may be much sicker than I am thinking. I know there are few options, but I just don't see where it is merciful or caring to let someone suffocate like that. Of course, she will die of something and I guess it is up to her when she is going to stop fighting, but I picture her refusing a treatment offered. She did refuse a Combivent nebulizer suggested by the pulmonologist, but I would not expect Combivent to be helpful anyway.

Can someone from among you please enlighten me as to what the priorities should be here? Do you have any suggestions for me?

Thanks so much.

[traumaRUs, MSN, APRN]

I'm so sorry for your predicament. I'm not a hospice nurse either but I think that a palliative pleural tap would be okay. However, I know that Medicare rules are very strict about doing things during a hospice admission. Can you talk with the hospice social worker and bring up your concerns? Would nebs help? Humidified oxygen? High flow oxygen by nasal canula?

[river1951]

We do palliative pleural taps all the time and it sounds as if that could be of help. Also positioning and tiny does of oral morphine- very helpful. If this hospice is not interested in helping you have a right to one who will. God bless you for advocating for your family.

Best of luck to you and your family-

river

[leslie :-D]

my response is the same as the others'...neb rx's/bronchodilators, ms04, ? anxiolytics, ? high dose steroids, electric fans/humidifiers, relaxation tx, breathing exercises, rt consult, all for dyspnea;

and palliative pleural taps are extremely helpful, if she doesn't fill up again within hrs.

please do not hesitate in asking for another hospice referral and you could list all your concerns with the next hospice. they should all be familiar w/medicare guidelines and your concerns are far from unreasonable.

many hospice pts do not get physical pain but ms04 (as well as a host of other interventions) would still be indicated for her dyspnea.

it's pertinent you find a hospice that is on the same page as you and your family.

i wish you peace to you and yours.

leslie

[Iluvhospice]

Our hospice does palliative pleural taps also - generally patient revokes their Medicare Hospice Benefit during the hospitalization, and then we readmit them post-procedure. Morphine and Ativan are standard palliation drugs for dyspnea.

Do you have a choice of hospices in your area?

[aimeee, BSN, RN]

From the picture you are painting, I wonder if fluid buildup is really the problem. With widespread metastatic disease there may be substantial tumor burden that is mechanically preventing lung expansion and also substantially reducing the surface area for gas exchange. When you add the heart failure into the picture, there is yet another reason for impaired gas exchange. You state she just had the pleural fluid drained a few weeks ago and if excess fluid IS the cause, it has come back fairly quickly. This is often the case once you get fluid buildup in places where it should not be...draining it off gives very temporary relief and then you are right back where you were before because the underlying causes are still there and usually worsening.

As stated above, small doses of morphine can help alleviate the FEELING of dyspnea. Bronchodilators might be helpful, but may not if the dyspnea is caused by tumors pressing on the airway.

If you are not happy with the care of your assigned nurse, you might want to request reassignment to a different nurse. Your team members should not become "testy" when you call to discuss solutions to symptom management issues.

[doodlemom]

Our hospice does palliative pleural taps also - generally patient revokes their Medicare Hospice Benefit during the hospitalization, and then we readmit them post-procedure. Morphine and Ativan are standard palliation drugs for dyspnea.

Do you have a choice of hospices in your area?

Your hospice should not be revoking the patient during this procedure. It is related to the patient's comfort and should be paid for by your hospice. The procedure is not that expensive and should not require an overnight in the hospital.

[sukichaz]

Thanks--from the bottom of my heart--to everyone who replied. I have a much better sense of what hospice can do in this situation for symptom relief and comfort meaures. I shared this information with my father. He is going to ask the hospice nurse coordinator about some of the other treatments mentioned. I think with a diplomatic approach we might not have to think about changing hospice providers.

I was wrong, I guess, to think the Combivent would not be helpful, since last night Mom found a Combivent inhaler her pulmonologist gave her last year and tried it and found it helpful. Today my dad reported to me that she had a good night's sleep and today put on her street clothes and spent some time without her O2. It's such a relief that there is at least for the time being, a treatment that is making a difference.

[river1951]

"Your hospice should not be revoking the patient during this procedure. It is related to the patient's comfort and should be paid for by your hospice. The procedure is not that expensive and should not require an overnight in the hospital."

Right on! I am so amazed at the number of hospices that discharge patients for getting treatments so related to their terminal illness. I don't understand how they read the COPs so differently than we do.

I'm glad your mom is doing better, Sukichaz. I will kee pyour family in my prayers.

River

[BeExcellent]

If your Mom does seem to need serial taps, you may consider a Denver catheter placement. This allows easy home (sterile) para or thorcentesis. I have had a few pts d/c'd from acute care with one and was amazed at the ease of use and the improved quality of life. You can find info online with a simple "how to" video. Google " Denver catheters."