It usually ends up on the second shelf of the refrigerator, behind the milk. A small sealed box or a zippered pouch, delivered in the first day or two, and then nobody touches it for weeks.
Then at some point it is two in the morning, something is wrong, and that box is the closest thing to help in the house. I would rather you know what is in it now, while the kitchen is quiet, than read the labels by the light of the refrigerator.
One rule, and it comes before all the others
Call us before you open it. Not after. That is the whole rule, and the only part of this article to memorize.
The reason is not bureaucratic. The right thing to give depends on which symptom you are looking at, and symptoms at the end of life imitate each other constantly. Restlessness can be pain in someone who can no longer tell you where it hurts. It can also be a full bladder, or fear, or the beginning of delirium, and those four do not get the same answer. On the phone we can usually sort out which one it is by asking what you are seeing. Then we tell you what to give and how much, we write it in the record, and we decide together whether a nurse should come out.
The kit is in your house because a pharmacy at two in the morning is not a plan. It is not there so that you have to make the clinical decision alone.
The morphine, and the thing you have not said out loud
Almost every family has the same worry about the morphine and almost nobody says it first, so I will. You are afraid that giving it will be the thing that ends your mother's life, and that you gave it.
It will not, and here is what we know. Opioids given at doses aimed at the symptom, and adjusted the way we adjust them, do not shorten life. That has been studied repeatedly and the finding holds. And opioid trouble does not announce itself through breathing first. It shows up as drowsiness and confusion well before it touches someone's drive to breathe, which means a wide margin and a visible warning long before anything dangerous.
There is also a trick of timing that has convinced a great many people otherwise. When someone is dying and receiving regular medication, there is by definition a last dose. Sometimes death comes twenty minutes after it. The dose did not cause it. It was the last one given before something already underway finished. I have watched that coincidence sit on a family's shoulders for years, and it is worth naming in advance.
The morphine in that box is also not only for pain. It is the most reliable thing we have for breathlessness, which is its own kind of suffering and frightens people more than pain does. The doses used for air hunger are small, and relief usually comes without any measurable change in someone's breathing.
Nobody becomes an addict in the last weeks of life. That fear belongs to a different situation.
The other two, and why one of them alarms people
There is usually a small bottle of lorazepam, for anxiety and for restless agitation that has nothing to grab onto. It works quickly for most people. In some, particularly the very old and people with dementia, it does the opposite and worsens agitation, which is another reason to call rather than guess.
There is also haloperidol, and I raise it because families look it up. What you find is that it is an antipsychotic, and suddenly the box feels sinister. At the doses used here it is doing something plainer. It is one of the better medications for nausea at the end of life, better than several drugs marketed for that, and it settles the agitated confusion of the last days. It is not there because anyone decided your father is psychiatrically ill.
It has real limits. In Parkinson's disease it can worsen movement, and with some dementias we are careful. Those are details we already have in the chart when you call.
The drops for the rattle, and an honest word about them
In the last days breathing often becomes wet and rattling, because saliva pools where someone is too weak to clear it. There will be something in the kit for it, drops or a small tablet under the tongue.
Here I want to be straight with you, because this is a place where hospice practice runs ahead of the evidence. Studies have not shown that these medications reliably reduce the noise once it has started, and there is reason to think the person is not distressed by it, because it comes at a stage when awareness has usually faded. Started early, before the rattle appears, they do seem to make it less likely to develop.
We use them, and we tell you what they are for. Turning someone onto their side and raising the head of the bed often does more than the medication. And the noise, hard as it is to sit with, is not the sound of someone drowning. It is the sound of a person too deeply asleep to clear their throat. Some of what we treat in that moment is the distress in the room, and there is nothing wrong with that.
The unglamorous half of the box
The rest is plain. Acetaminophen, usually as a suppository, because fever is common and swallowing often is not. And something for constipation, which matters more than families expect.
Constipation follows opioids in the large majority of people who take them, and unlike drowsiness and nausea it does not fade with time. It is miserable in a way that can undo the good the pain medication is doing. So we start something for the bowels at the same time as the opioid rather than waiting, and we keep asking at every visit even though nobody enjoys the question. One note: the fiber supplements that help healthy people are the wrong choice here. We use stimulants and softeners instead.
What the kit is not
It is not a substitute for a nurse. The answer to a hard night is often a visit rather than a bigger dose, and asking is not an imposition. Medicare requires that nursing be available around the clock, and our intake coordinator answers the line at every hour.
It is not complete either. It covers the handful of symptoms that most often turn a night bad, not the medication your husband has taken for years, and not a new problem unrelated to the illness. And some people cannot use parts of it: when kidney function is poor we substitute a different opioid for the morphine, deliberately, not at the sink.
And it is not yours to titrate. I know that sounds rigid when you are the one awake at three in the morning. But the record of what was given and when is what lets the next nurse decide well, and a dose that seemed obvious at three often turns out to have been the wrong drug entirely.
What happens to what is left over
Nobody asks about this until afterward, when there is a bottle of morphine in the house and no patient.
We are required to give you our written policy on safe handling and disposal of controlled medications when they are first ordered, to go through it with you, and to note that we did. If that happened in the blur of the first week and you retained none of it, that is normal, and you can ask again.
What surprises people is that in most cases our staff cannot simply carry the leftovers away. Federal rules on who may take possession of controlled drugs are narrow, and a hospice nurse in your home usually is not covered by them. Instead we stay with you while you dispose of them, and document it. If there is anyone in the household for whom opioids in the house are a risk, tell us at admission and we will work differently from the start, with a lock box or a smaller supply. That conversation is common and nobody will think less of your family for it.
Before the night you need it
If the box is in your refrigerator right now and you have never opened it, take it out this week while nothing is wrong. Read the labels. Notice which things go under the tongue and which are suppositories, because that is not something to learn at three in the morning. Then put it back.
Then call us with whatever it brings up, including the question about the morphine, which you are allowed to ask plainly. Our number is (818) 273-4884 and someone answers at every hour. We speak English, Armenian, Spanish and Russian, and we care for families throughout Southern California.