Hospice — If, When, Why, & How

It's "if." Many P/CALS (us among them) never reach that point or explicitly opt out. You may get pressure to sign on to hospice, but it's totally your choice.

No one has to sign on to either palliative [comfort-focused acute care, a specialty like cardiology or oncology] care or hospice [formal eligibility in terms of life expectancy must be certified by a doc; all ALS-related and most other medical care/expenses are transferred to the hospice agency], which vary widely in helpfulness.

Unlike what's portrayed in TV and film, you should at least know that the hospice agency is paid a fixed amount per month, which won't fund anything new and expensive, and may not fund the supplies and drugs that your PALS is used to. You should also know that once someone is on hospice, Medicare may refuse to fund any drugs that the hospice does not provide, even for non-ALS conditions.

Working the Problems: Movement, Support, Sleep
If you find an agency you like, great. Interview them first about what services and people will be involved, how they view comfort vs. length of life, etc.

If you don't find a fit, or you want to work the problem on your own, the top 3 ways to address overall discomfort, anxiety, and trouble sleeping are:

Positioning and passive range of motion exercises: (cushioning, angle, joint support) in bed, wheelchair, recliner, etc. I see so many PALS not making the most of their hospital bed and/or wheelchair (seat cushion, neck rest, arm supports that work; the right footwear).

For instance, a bare hospital mattress is usually like sleeping on a rock if you don't have an overlay on it. I favor the green latex line (Amazon) for most PALS, with a choice of thicknesses.

Very gentle therapeutic massage adapted to the PALS (reducing edema by gently moving fluid toward the center of the body is another reason to do this) and by doing passive range of motion exercise while protecting the joints (for example shoulder and elbow support while bending the arm), a CALS can greatly reduce pain and stiffness. You can ask your doc for a PT order to show you the best exercises if needed.

These exercises are especially good in the morning/early afternoon. A PT runs through my late husband's wheelchair routine (that we then implemented ourselves) here.

The bedroom can add or subtract comfort. Good sleep is about not having to worry about things that may disrupt it, from pain to pressure to noise to stuffiness,

For PALS who run stiff/cold, a low voltage heated mattress pad (yes, even in summer) can go under the overlay or mattress. A fan and/or air purifier can reduce stuffiness. Machine/furnace filters should be replaced every quarter and humidification of room/machine should be adjusted with the seasons and needs.

Falling asleep in comfort to a movie, audiobook, music etc. can make a big difference. And having a workable alarm system, if needed, to wake up the CALS also reduces stress. This may entail high or low tech.

BiPAP settings and secretion management: If you felt like you were running a race or were underwater every second of the day, you'd be anxious, too. That's what overstuffing muscles that can no longer handle the air volume provided by the machine (the #1 settings issue I see) does. And many machines are not synched to the person in terms of when the bulk of air goes in/drops down for exhalation.

Secretion management -- prevention comes first.

Can a CALS or family fly solo?
If none of this is enough, of course, there are drugs for pain management and air hunger, which are principally but not only morphine and codeine. Any PCP or prescribing clinician, from a dentist to a nurse practitioner (in most states) to a psychiatrist can write them, and the CALS can administer them. When you're no longer measuring, the only prime directive is to give drugs until your PALS is comfortable.

If a good death is the near-term plan, the CALS is the person best equipped to follow the PALS' wishes as to the pace, how and when of passing on.

Conversely, if the PALS sees more runway, who will better to support that, the CALS, or a new-to-you third party?

A peaceful death is the last and best gift, in part because it's not easy. You may spend every waking hour and then some trying to provide comfort in the midst of a recognition that death is near, and it does physically fall on the CALS to implement the PALS' wishes.

In most cases, though, that great gift does not need to be outsourced. It just needs to be given freely. You will never regret it.