End stage COPD

[rachelgeorgina]

I was wondering if anyone knew much about the management of end stage COPD (Chronic Obstructive Pulmonary Disease.) I understand that it's a progressive condition with no cure - the patient I'm thinking of is 87 with severe COPD/Type II Respiratory Failure - and I've been trying to research the best ways to manage her discomfort and dyspnoea in these last months.. It's getting to the point where she can't walk to the loo (

She has recently moved in with her family because she had a massive decline after the death of her sister. She's had two hospitalisations in about as many months for exacerbations however the medical staff have made it very clear that there are no more medical treatments worth pursuing (she's had two courses of CPAP to bring down her PCO2, however she refuses the mask and it's made little difference to her PCO2, which is sitting around 80.)

She recently implemented home oxygen therapy with an oxygen concentrator at 2L/minute, which relives some of her dyspnea at rest however even eating or moving from sitting up to lying down wear her out. While she's been in hospital we've trialed a course of PRN Zyprexa at night to try and help her sleep (and at one point, relive her agitation when the CPAP was on.) We're hoping to continue this at home because she does not sleep (and thus keeps her family awake at night, calling out every five minutes even though she doesn't want anything.)

Other than regular ventolin (via spacer) and seritide I'm afraid there's little else that's been suggested and I wonder if there are any particular palliative care related interventions which may make her a little more comfortable?

[tewdles, RN]

funny how docs can be more "afraid" of respiratory depression than of suffering for these COPD folks and so choose ineffective or no treatment at all. Unfortunately all too common an occurance. You have gotten some good advice, thank you for advocating for your patient.

[sunnycalifRN]

home hospice referral is definitely needed. once that is established, the hospice protocols will make her comfortable. our hospice uses nebulized morphine for dyspnea along with IV and I'm told that it works well.

[leslie :-D]

our hospice uses nebulized morphine for dyspnea along with IV and I'm told that it works well.

i have found nebulized morphine's effects to be variable, but have consistently worked well with those w/pulm issues.

(and yes, you should have a mso4 gtt running as well.)

leslie:)

[rachelgeorgina]

^ Thank you all so much for the replies. I've seen some research casting doubt on the effectiveness of nebulised morphine. I had no idea it even came in a nebulised form!

Has anyone got any tips for helping this family manage their relatives end stage COPD until they get a hospice referral? I suspect that the patient can no longer walk the 5m (decline in 4 weeks) to the toilet and is intermittently incontinent (can't recognize her own need for the toilet.) I know it sounds typical to nurses but adding this strain on a family, caring for the patient at home with no resources is profound.

[crb613, BSN, RN]

^ Thank you all so much for the replies. I've seen some research casting doubt on the effectiveness of nebulised morphine. I had no idea it even came in a nebulised form!

Has anyone got any tips for helping this family manage their relatives end stage COPD until they get a hospice referral? I suspect that the patient can no longer walk the 5m (decline in 4 weeks) to the toilet and is intermittently incontinent (can't recognize her own need for the toilet.) I know it sounds typical to nurses but adding this strain on a family, caring for the patient at home with no resources is profound.

Will she be sent home with morphine, anti-anxiety, steroids, neb tx?? I would teach how to use the meds....keep her comfortable, and dont be afraid to use the medications. Can you imagine smothering???? Keep her comfortable!The family should be taught total pt care. What about spiritual care? I would also suggest teaching how important it is for her to maintain dignity & as much control as possible in regards to her health care. Foods easy to digest, consume would be helpful if she will eat at all. Stool softners, fans to keep air moving & keeping the room temp cool to cold. Perfumes, air freshner anything that is smelly is often very hard for a copd pt. A hospital bed would be very helpful. The family may not have come to terms with her death, they may still be looking for a cure. Maybe someone could help them to understand what the goals are now.....would it be possible to contact Hospice before she goes home? She is so lucky to have you as her nurse! God Bless you!

[ghillbert, MSN, NP]

Is she public or private patient? I know my mother went to private hospital and they have their own palliative care unit - patients can be referred by dr or self-refer just by calling. It is covered by health care fund if privately insured, and is also covered by Medicare if public patient. If you're working at the hospital, it should be easy for you to call palliative care unit attached to hospital and work out home visit.

They need to get referred ASAP as usually the nurses like to come out and meet them, see the setup at home before they are really desperately needed. They can help with hire of hospital bed, commode, shower chair etc. Also the family can call the council and ask about hire equipment too, usually at very low cost. The palliative care nurses generally leave a pack of "emergency drugs" at the house which includes oral morphine, antiemetics, a few other things in case the family/pt get in trouble overnight/weekend and can't get to a doctor. They can put in a thing (used to be called "butterfly", can't remember new name!) subq and give morph that way too.

Inpatient palliative care unit can be extremely helpful for pain and symptom management, and then send her home once sorted for ongoing care.

In our case, mum has anywhere from weeks to months left, and is mostly mobile and independent, but it's been just fantastic getting palliative home care involved. Even knowing there's someone you can call if you are worried etc.

[tewdles, RN]

^ Thank you all so much for the replies. I've seen some research casting doubt on the effectiveness of nebulised morphine. I had no idea it even came in a nebulised form!

Has anyone got any tips for helping this family manage their relatives end stage COPD until they get a hospice referral? I suspect that the patient can no longer walk the 5m (decline in 4 weeks) to the toilet and is intermittently incontinent (can't recognize her own need for the toilet.) I know it sounds typical to nurses but adding this strain on a family, caring for the patient at home with no resources is profound.

We could give lots of advice here, however, it is imperative that this patient get hospice or in home palliative care...ASAP. Without organized and committed assistance this family will struggle with meeting the COPDers needs, period. Someone must shake the trees for this woman. It is not acceptable for her to languish without hospice or palliative support for the convenience of a physician or his/her office staff while they "consider" this referral in a leisurely fashion. Her life expectancy is short...too short to waste valuable hours or days waiting for someone to decide that a referral is appropriate. I will vent by saying that patients with these type of chronic but life ending illnesses who come to hospice only days or even a few short weeks before death INFURIATES me!! That typically means that these people have SUFFERED for many days prior to the referral and the family has been unbelievably stressed watching their loved one suffer because of a failure on the part of their physicians. Too often these people come to hospice desperately ill and symptomatic...they believe that they CANNOT POSSIBLY be comfortable and are so depressed and anxious and sick that it is heartbreaking. Somebody close to this woman needs to start making phone calls on a daily basis...advocating for her even at the expense of irritating the medical staff in the office. A referral to a hospice needs to be made and the primary care doc needs to help her patient by completing the referral immediately. The family and her friends need to make it a mission to get her the care she needs and deserves, even if it means pi$$ing off the medical provider.

okay...off the soap box now.

btw...my mom died a couple years ago from COPD...she went into hospice months later than she should have partly because of her choices, however, had her doc been a pro-hospice advocate she would have accepted that help sooner. When she finally accepted hospice it was only because I INSISTED that she at least talk to the hospice people without a physician referral. Then I called the MD office and told them that we wanted the referral and expected him to sign a CTI, he complied. She died 2 months later. Sad, Sad, Sad...and all too common.

[rngolfer53]

Definitely refer to palliative home care. We just got them involved in my mother's care and they have lots of tips and tricks to make people more comfortable.

It is true that lung/COPD patients tend to be anxious, even after longstanding disease. You don't usually worry about respiratory depression in true "end stage" palliation.

"Anxious" is almost a given, as the experience of severe, or even mild air hunger is most unpleasant.

To know that this is the future of your now short life must be terrifying.

As several others above have noted, morphine and lorazepam are effective in most people.

What really bugs me is the number of family members of COPDers and lung cancer Pts who are watching their loved one die from these.................and heading outside every little bit for a smoke. You would think that the would go off sometime.

[dmc_rrt]

Nebulized morhine helps too.

[OldnurseRN]

One new thought is to give the oxygen they need to provide them comfort. As a former respiratory therapist we were taught 'normal' people breathe to get rid of CO2. COPD patients breathe to get O2. Give them the O2 and they have no reason breathe. The old anoxic drive theory. This theory is no longer considered valid. Morphine and oxygen are clearly indicated in end-stage COPD.

[Scrubby]

Lack of follow up care is something I used to see all the time on the wards. Hospitals just seem to want to shove patients out on the street because the ED is full and theres no beds etc.

On the other thread I have recommended RDNS service. I found them great, although you may end up with out of pocket expenses it's better than anything the hospital can do...which believe me is not much. I'm guessing its the public system too.

I would definitely write a letter of complaint to the hospital CEO, speak to the health department about the callous attitude that you've described. Sounds like there is no emotional support given to your grandmother and family. As a RN I believe that your grandmother should be having palliative care right away.

[gailene]

My mom is 79. She was diagnosed with COPD about 5-6 years ago. Quit smoking 3 years ago. She now can only walk about 10-20 feet with her rolling walker and 3 liters nasal cannula. She took 20 mg prednisone qd prior to last hospitalization, weaning from 40 mg now. They admitted her through ed for pneumo, but it was just the old one they were seeing, they said. She's had two; one in January and one in June. Regardless, they kept her for four days starting on high flow o2 @ 15 liters nasal cannula and weaning back to 3 when she was discharged, five days ago. She remains on 3 liters nasal cannula. Anyway, she is dyspneic throughout the day, but sleeps well. Even the littlest motion with her hands can send her into what she calls a "hair on fire fit". Most times we can bring her out of it by doing pursed lip breathing with her. Normally she breathes just backward, in through her mouth and out through her nose. As a nurse, this is hard for me, since she gets mad at me when I try to gently remind her to take her breaths through her nose. Routinely sats 98% for Home Care (from her hospital stay). I am actively seeking a hospice order from her pulmonologist. Any opinion on how long we might have her?