Ask the Hospice Worker

Miscellaneous and Personal Stuff I Must Share
41

I was intending to ask you opinion about this. I’ve had some experience with Oregon’s physician-assisted suicide law (or whatever euphemism they call it). In my experience the process was sufficiently cumbersome as to make it difficult (to nearly impossible) to take advantage of, I would guess that is the reason that it is used so rarely. Forgive me if I come off as evasive, I’m going to try to avoid sharing details that aren’t mine to share. Elderly patient diagnosed with cancer in stage IV. Due to bone mets patient was in constant pain that could never be adequately controlled. Patient had expressed views in favor of physician-assisted suicide (both in principle and as a personal preference) for decades; there was no doubt as to their wishes on the matter. Patient lived in the southern part of the state and no local (50 mile radius) physician who was willing to do the paperwork could be found – this included the patient’s oncologist and PCP of more than two decades. (FYI TWO physicians are required. One to take and document the request, to certify a terminal prognosis with less than six months to live, and to write the script for the drugs. And a second to perform a chart review and verify the prognosis.) The Oregon death with dignity organization (I’ve forgotten what they’re called) put us in touch with a physician in Portland. The process requires that the patient make two oral requests to the physician no less that fifteen days apart before finally making a written request. The time delays caused by all this nonsense moved us beyond the point where the patient could demonstrate the mental competence necessary to make the decision (due to opioid use, not disease progression). Additionally we were told that drugs were not available in the US and would have to be purchased from Canada, that the drugs could only be administered orally, and that the patient was required to lift the medication (something on the order of fifty or a hundred capsules) to their lips unassisted.

What was your patient’s experience with the process?

42

Thanks for all the answers. Keep up the good work.

43

Let me ask some questions about how it’s decided when the patient has “less than six month” left and is thus eligible for hospice.

Suppose you have a patient is bad shape (say, paralyzed, or in serious pain, or something) but whose health, bad though it is, is “stable”. That is, as long as the patient is fed, taken care of, given his meds, he is expected to live indefinitely long. (That is, six or more months or whatever, but is not facing any kind of imminent death.)

BUT, take the patient off his meds, and he’ll be dead much quicker, with a prognosis less than six months. Maybe even as little as a week.

Now, suppose the patient requests to be taken off of all medical support, and go into a hospice in palliative-only mode. So, his current status is, life on meds with > 6 months, versus life in hospice < six months.

Does that person qualify for hospice? Does he qualify to be taken off life-sustaining meds and go into palliative treatment?

Next some variations:
– Suppose the patient is in pain or paralyzed and wishes to go into hospice/palliative mode. But it’s not the meds keeping him alive, it has more to do with just feeding him. As is, he’ll live > 6 months, and even off meds, he’ll live > 6 months, but in great misery. But stop feeding and hydrating him (and supposing he can’t feed himself), he’ll be dead soon. Does this patient qualify for hospice/palliative?

– Repeat the same questions as above, but with this difference: The patient is mentally unable to formulate his wishes, or physically unable to communicate them. But he has a long-standing AHCD that clearly states his wishes to NOT be kept alive like this. Does this patient qualify for hospice/palliative? And even if so, will his wishes be recognized and honored?

44

I have a relative who was terminal with cancer and her husband didn’t want to give up. He was finally convinced because the ICU could not give her pain medications at a level to keep her comfortable, but hospice could, because hospice wasn’t really worried about keeping her alive. Which isn’t to say they could give her enough drugs to kill her, but they could apparently have a heavier hand than the ICU.

And adding my thanks, hospice care is a wonderful thing and hospice workers. When my brother in law died this summer, the hospice nurses were really instrumental in helping the family deal.

45

One more heartfelt thank you, Lancia, for your work. Though I live in the Columbia River Gorge at the north end of the state, I can tastify that even 16 years ago, the hospice care we received when my late wife was dying was competent, subtle and sensitive to the needs of multiple family members.

One thing I noted - because heroic end-of-life care care can be disconcertingly expensive, our insurance paid the whole hospice costs with nary an equivocation

46

Tell us about THIS, Lancia. Is hospice care in fact much cheaper than any alternative? Both because the care itself is much simpler than, say, ICU care – and also because it’s typically over much quicker?

And if so, are health insurance companies indeed willing and eager to pay for it with nary an equivocation? Does it indeed typically work out that way?

47

Lancia, is the facility you work in hospice-only, or do you also have patients undergoing rehab, or in other kinds of temporary care? Do you have patients who are very long-term (such as disabled people whose specialized care can’t be provided at home, but they’re not dying)?

In Spain, end-of-life care is considered part of general hospital care; there’s areas or rooms which are hospice, but they are not labeled so - in general, if your relative gets a single room (not a double with the other bed empty, but a single with lots of space where the second bed would normally have been) in a Spanish public hospital, it’s bad news. There are special care facilities, but these have a mixture of long-term residents and dying people whose children have finally admitted that taking care of Mom/Dad is killing the rest of the family. On one hand it leads to the workers being less specialized, but on the other it’s easier to rotate someone close to burnout to a different area (it can be as simple as assigning them different rooms in the same floor) than to keep replacing people.

48

Senegoid, I addressed this upthread. Most insurance covers hospice on a per diem basis, so the agency gets a set amount per patient. They don’t bill for specific care given. This allows the hospice to provide services, such as housekeeping, that aren’t typically covered under most health insurance. This is why it seems that insurance is so willing to pay all of the bills; the reality is, they don’t care how the hospice spends the money, so long as it’s on patient care. They do get audited periodically to make sure of that.

That being said, hospice care is much less expensive than most acute care, which is part of the appeal from a policy and reimbursement standpoint. The per-diem nature of reimbursement makes it somewhat difficult to do an apples to apples comparison of cost, but when you don’t have to pay for procedures, and most day-to-day care is given by CNAs and volunteer caregivers, hospice care usually makes more sense for end-of-life care than care at an acute or long-term care facility.

49

For some reason my internet connection isn’t working and am stuck using my phone. I’m not ignoring your questions, just waiting until I can get a signal on my laptop.

50

I felt that hospice agencies were in it for the money: I would see one of our residents in the facility declining and when hospice came in for a consult the response was “nope, can’t help”. Pissed me off to no end. After I left the facility and went to work for hospice proper, I realized that they were working with a physician, and there was likely some legitimate reason not to put someone in hospice care. My anger was fueled by simple ignorance.

I’ll stop it there and say that the decision to put someone on hospice is, naturally, a decision made between a patient or their family and a physician. It is not a process which I am privy to, so I cant answer those questions. I will say that many millions of people are living normal lives because of the medications they take, and stopping those medications will likely result in a quick death. Type I diabetics and people with AIDS who are on anty-viral regimens are typical examples. So obviously those people do not qualify for hospice simply because they need life-sustaining medication on a routine basis.

We were classified as an “assisted living facility”, which meant there was no RN on staff 24/7, only during normal daylight hours. Other than that we performed most of the services of a nursing home, including physical thereapy, rehab, and yes end-of-life care. We did have many long-term / permanent residents, many of which were somewhat self-supporting but couldn’t function at home due to injury or disease.

Now I work strictly as an in-home worker. I no longer do facility work.

51

My take on “terminal sedation” is that while death may be hastened as a result, it’s not the specific intention - but more, it’s a side effect of the treatment. The patient is given enough medication to keep them from suffering, even though that level of medication causes full-on unconsciousness and possibly even death - either directly, or because it leads to fluid in lungs etc.. Hence, it’s acceptable.

So to me (and I’m not a medical ethicist or medical anything) the difference is the intent. Plus, if you were going to do full-on euthanasia you’d give a larger dose of the narcotic or whatever right up front, not the “just enough to keep 'em unconscious” dosage.

52

When my mother-in-law was dying this past January, she remained at home in palliative care the entire time. The hospice nurse was amazing. She would show up at 2am with Ativan and Morphine if that’s what was needed. She’d be back again at 7am.

I had never heard the term “terminal sedation” but I assume that’s what my MIL had. After a certain point, her wakeful moments were fairly horrific. She was agitated and in pain if the meds wore off, so it was important to time doses well. But the nurse would talk to her before every move: “OK, honey, I’m just going to roll you over for a moment”, etc.

I did feel that the nurse had a certain amount of affection for my mother-in-law, based on how she talked to her and about her. Can you tell a story, Lancia, about getting attached?

You also mentioned people hanging on far past when their prognosis had been. What are the conversations like in those situations, particlularly with lucid and engaged patients? Do you have any clear examples where someone seemed to be waiting to say goodbye to a family member or hanging on for some reason?

My MIL lasted almost a week longer than the nurse initially expected. It was seriously shitty. There wasn’t any way she was going to NOT die, and even though we all talked to her she could not talk back, so after a while, the extra time was not a comfort or enjoyable. But even saying that is basically saying, “Geez, would you hurry up and die already?” and no one wanted that.

Wow. I’ve just made myself seriously sad. I don’t know how you do this every day. What do you do recreationally for stress management and to have a little fun?

53

Agreed and seconded. You people do a great service and, in my opinion, deserve more credit for what you do.

54

I was at a local watering hole a few months after my husband died. And old friend introduced me to his new lady. I chatted, all the while thinking “Damn, she looks familiar.” Convo got around to, as it usually will, “so what do you do.” When she said she was a nurse for XXXX, not wishing to say hospice, it came to me. She was the attending on call when my husband died. Very strange in a social situation, to say the least.

55

Have you ever had a patient make a deathbed confession?

Also, how has your job changed your view of death overall? Do you feel an above average sense of carpe diem?

Do you ever grieve over people once they have gone, or do you see it only from a technical standpoint?

I also thank you for your service. And I think it is shameful that hospice workers get paid so little.