End of life care gone wrong

Nurses General Nursing

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I'm not actually a nurse (yet) and this is really from a relatives point of view, but I wanted to share it here.

Patient is an 87-year-old female with COPD/Type II Respiratory Failure, end stage. She was discharged from the respiratory ward three days ago into the care of her family with the parting words, "she's dying, we don't know whether it will be days or weeks" and no offer of support, sympathy or palliative care services from the medical staff. Three days later patient is found, at home, with a GCS of 6, laboured breathing (more so than typical) and a raspy, wet gurgle. Community nurse arrives in the home and assess the patient - who is very obviously in severe CO2 overload and, bluntly, dying. Not dying as in the broad sense of the word, a process - but dying now, today, soon. Nurse assesses the patient and then sits down with the family and recommends.... get this: finding a GP who will do home visits.

Does anyone else see something wrong with this situation?

The patient is actually my grandma. When the nurse left without doing anything other than assessing that signs of life were draining, and draining quickly, it was suggested (by someone else) we phone an ambulance. The paramedics couldn't have come sooner.

Specializes in LTC, Med-SURG,STICU.

I am so sorry for the situation that you and your family are going through at this time. I hope that you can find the resources that your grandmother needs to help her be as comfortable and as peaceful as possible during this process. I also hope that you are able to find the help that you and your family needs to accept and find peace with the death process. If there was anything that I could do to help you I most certainly would.

My heart goes out to you and your family during this trying time.

Specializes in Operating Room Nursing.

Try giving RDNS a call...they have nurses who specialize in palliative care. A few years ago I had surgery and was VERY dissatisfied with the lack of follow up wound care (long story) and so I self referred. I had out of pocket expenses but the nurses were absolutely fantastic. So please give them a try. They can also help arrange support for you and your family as well.

Very sorry to hear about what's going on with your grandmother.

Specializes in CTICU.
Just curious as to how and why that would change the advice you offered to her. Would you have omitted information had you known she was a layperson?

Who knows how I may have phrased things differently? I didn't have the opportunity in any case. There are clear Terms of Service on this website which state that posters may not seek or offer medical advice. Asking what sort of medications/treatments someone should be on would probably fall under that.

Waiting lists?

Universal healthcare?

I'm so sorry.

Sorry to burst your bubble, but I'm in the same country, albeit a different state, and we were referred Tuesday, called Wed and had palliative care nurse here on Friday. I find it difficult to accept there are waiting lists on palliative care services as that wasn't my experience at all in the past couple of weeks.

Of course, people still have the choice to take or refuse supplemental private health cover.

Specializes in ..
did you go through all those hospices that i linked for you? (from your other thread)

Yes, and thank you. We're already aware of the services out there, it's just getting into them that's the problem. There's all sorts of issues with being in/out of area, the referral process (i.e. having a doctor competent enough to do that, which we don't at the moment) and the wait for a bed.

If there's a waiting list for hospice, a GP who does home visits might be the next best thing. They can give orders for morphine, scopalamine, and other medications.

At the point this suggestion was being made.. it was useless. She was in severe CO2 overload (PaCO2 124mmHg) and would have been dead in less than hours. I travelled in the ambulance with her and as soon as the paramedics had closed the doors on my family standing outside they started saying that she was about to code and that they weren't sure we were going to make it.

Sorry to burst your bubble, but I'm in the same country, albeit a different state, and we were referred Tuesday, called Wed and had palliative care nurse here on Friday. I find it difficult to accept there are waiting lists on palliative care services as that wasn't my experience at all in the past couple of weeks.

The difference might be that you were referred whereas we hadn't been, which complicates things and extends wait periods, especially as an outpatient (apparently.) When my dad was dying we had amazing palliative care services both at home and then inpatient hospice but for some reason these same services haven't been activated for my gran. I can't tell you why, though I could speculate...

Amazingly... she's pulling through. She's been on the NIV with some heavy duty antibiotics, steroids and fluids but tonight she was sitting up, talking and demanding to be fed (which we thought was a good sign!) One of the (few) amazing nurses on the ward (we've been frequent flyers) saw us this morning and said she was going to get onto the reg first thing monday about and referral to the palliative care team who should be able to coordinate transfer to the hospice of our choice.

Specializes in CTICU.

Oh good, glad to hear you've got someone working for her and that she's rallying. Sounds like a tough old bird ;)

Specializes in Peds/outpatient FP,derm,allergy/private duty.

I'm so glad you are getting some more time with your grandma, rachelgeorgina, and that she is out of the acute distress you described earlier. Grab onto the ankles of the friendly nurse that offered to help her with the palliative care referral, and don't let go! :)

Certainly she deserves to be made as comfortable as possible in her waning days.

Specializes in PICU, NICU, L&D, Public Health, Hospice.

me thinks all elderly women with COPD are "tough ol birds"!

Specializes in ..

Thank you so much for all your support and advice.

A hospice referral should have been initiated by the discharging hospital and physician.

The situation you relate resulted in unnecessary suffering for both your loved one and your family (obviously including you).

The community nurse who visited should also have sought hospice services, or at least orders for morphine and lorazepam for SOA.

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