Ways to Do the End of Life

Since ALS is, as of 2024, a fatal disease, in some ways, care for ALS is completely palliative (aiming at comfort rather than cure) from the day of diagnosis.

Jumping ahead to a common myth, discussed in more detail below: it is NOT true that the only legal ways to die are VSED (starving yourself) or "Death with Dignity/MAID (a formalized legal process). The rest of this page is about the alternative.

First, Live Until You Can't
That does not mean that life with ALS is nothing more than a journey to death. It can and should be so much more — time with family, friends, hobbies/passions/work.

Many PALS write books, music, poetry, or create art, or continue in their professions for years past diagnosis. They can watch as children and grandchildren grow, be present for events, travel, find wonder in nature, visit museums, attend concerts, etc.

But living with ALS does mean that there is no longer a need to measure, record, and limit any intervention that makes the PALS more comfortable while still retaining the capabilities that they want to retain in that moment.

A "good" death rests on foundations of autonomy, mutual agreement, and most often a peaceful passage at home.

PALS deserve the greatest voice possible in their own life and death. This is made possible when the PALS has specified wishes before or without dementia, and the CALS has agreed to support them, while allowing for possible changes.

Unnecessary suffering can and should be minimized to the extent desired by a PALS. But "natural death" often entails more suffering than a PALS wants.

Death anywhere can be comfortable, but for most, home is preferable.

Preparing from the Beginning
When first diagnosed with ALS, planning and paperwork that will be invaluable later, depending on what applies to your location, includes:

• A full family discussion with anyone who'll be implementing the end of life plan. This is no time to put it off — any one of us could die tomorrow. Everyone, not just P/CALS, should have this chat.
• Health care power of attorney
• Advance directive
• POLST or other locality-specific directive for EMTs
• An Emergency Protocol for hospital staff and first responders, in case you fall into their hands (it's a pretty good goal not to)
• You may want to start looking at your clinicians (MD, DO, PA, NP, PCP, dentist, ND, etc.) in terms of which one(s) will be amenable to a "DIY hospice" approach in terms of prescribing medication that can be titrated to comfort. When the time comes to write something, they will need to have seen the PALS within the last year.

Myths & Concepts
A few basics to keep in mind:
• You don't need to "use hospice" to have a good death.
• If someone is suffering, you give drugs as needed, adjust positioning, BiPAP and nutrition, and work the problem to address the cause. Most PALS do not require opioid drugs for most of the journey.

• No PALS has to say they can't breathe or it hurts to breathe until the very, very end, when you can stop measuring morphine. If they do, it's a mask, machine, and/or settings issue, or they are not on BiPAP.

• Most often BiPAP settings at the end of life need to be reduced, not amped up.
• You can give O2 near death if it improves comfort, but most often opiates are sufficient.
• When someone says it’s the end of the end, it usually is. There is no shame and no dishonor in deciding not to continue “fighting” an immovable force anymore, and it is primarily a physical issue, not a mental one.
• When the end is near, contact anyone that should know about or be around for the final chapter
• Leave it all out on the field. Don’t harbor regrets you don’t need to.

In much of the world, death is still a taboo subject and therefore a "don't ask, don’t tell” custom is practiced; thus, your choices may be legal, but it can be prudent not to discuss them openly so that other people's misconceptions of what is legal do not present any difficulty or concern for you.

Of course, the PALS and CALS should understand and agree in advance (if the PALS can no longer communicate or participate) or at the time, that a self-directed process will hasten death. The "advance agreement" should be reflected in writing, with a State-appropriate advance directive (and health care power of attorney, as well, if there is any question about the primary caregiver, e.g. if someone has no spouse and two kids).

We don't ask about hastening death and we don't talk about it, mostly. Maybe one day.

Whether supporting your CALS or supporting your PALS, no law can substitute for your own best efforts and sound judgment.

How the End of Life Begins
Gradually, PALS often use BiPAP more and more, sometimes continuously. However, even then, a PALS may gradually lose even the assisted ability to transfer, communicate, and/or engage with others because so much effort is required just for breathing, even when it does not appear that the person is struggling for air.

Or even if they are not using a BiPAP or don't think their breathing on it has changed, when they feel it's time, they may change sleep patterns, eat less, do less, be more restless, communicate less, etc. Everyone does it a little differently. The point is, in these kinds of cases, someone is still making a choice and the drugs are supporting it, not making it.

Some clinics will write an order for hospice at a certain point in progression. Depending on caregiving support, the PALS’ wishes, and available options, you can decide to enter hospice or not. Make sure all major equipment needs are met first, since Medicare will not fund DME for hospice patients.

The one thing to make sure of is that the BiPAP settings have been adjusted for maximum comfort (usually turned down to accommodate muscles that can't handle as much air any more), so you can be sure that the struggle is really “the end” and not just a signal that BiPAP settings have lagged progression.

Self-Directed Death in a Nutshell
Instead of a legal transaction or relying on third parties such as hospice agencies, "self-directed death" can be carried out by the PALS and CALS, with other loved ones attending as desired, at home, by adjusting medications such as morphine to full comfort while BiPAP is being used. As the medications take effect, BiPAP support (target volume, backup rate) may be gradually reduced and then withdrawn to permit a peaceful death, over a period of minutes to hours. More details on this are below.

When to Consider the End?
People often ask, when should self-directed death even be considered? That is every individual's free choice. However, a typical scenario is when air hunger is persistent, because even the best BiPAP settings are no longer enough. Or that someone has just had enough, for many reasons.

Contrary to myth, air hunger doesn't necessarily mean that someone is gasping for air. Often, they instinctively breathe more shallowly, but have less energy. They might be less interested in nutrition, communication, and/or transfers. There may also be increasing pain and exhaustion for a variety of reasons. Basically, these are reasons and signals for considering this phase to be the beginning of the end.

At this stage, many PALS opt for a "self-directed death," which is different from Death with Dignity laws or asking hospice to manage their death.

You can summon any out-of-town family or friends that are needed for the final chapter, to call/email/text others, make any farewell social posts, etc. It is also the time to reinforce to those in the household, if needed, that no ambulance calls are to be made, and no drastic measures taken.

When air hunger first manifests, liquid forms of codeine can be given orally or via tube. This is especially helpful for breathless that takes the form of coughing, choking, or gasping.

Or you can start with morphine, or bring up the dose if the PALS is already using it.

Of course, it's fine to give codeine and morphine in alternating intervals. This is a phrase where you are no longer measuring. By prior agreement, CALS can freely administer morphine, codeine, alcohol, marijuana, psychedelics such as ketamine, mushroom, or anything else that helps the PALS feel better.

This might be a gradual process to enable winding down, balancing out with whatever state of consciousness the PALS wants to be in during the last days. There's not too much to say about that except to use comfort as a guide. Unfortunately, this approach can resemble VSED because no one is really in control. So it can be prolonged, the PALS may be dehydrated, malnourished, hallucinate, etc.

On the Day
Again, everyone's different. Maybe you or your PALS don't want to pick "a death day." If not, you can play it by ear as per above.

However, typically no one really wants a drawn-out process. That's where a "this is the day" decision comes in, where everyone has said goodbye and everything else they want to say — expressions of regret, appreciation, gratitude, and most of all, love.

Music, candles, touching, hugging, short speeches…depending on the PALS' status and wishes, everything's on the table.

While providing morphine and any other comfort aids, in a "not measuring" context, the CALS can gradually reduce BiPAP backup rate and target volume, allowing breaths to become slower and shallower as the medication(s) work. If the CALS does not know how to do this, it is not strictly necessary, but does smooth things out a bit. (And if you're not on the last mile yet, adjusting a BiPAP is a really important thing to learn so you can adjust settings for choking/coughing if nothing else; see the BiPAP page).

For someone on BiPAP, to decide when to withdraw it, when they are sleeping peacefully, you may want to look at the screen to see "spontaneous trigger 0%," which means that the machine is initiating all the PALS' breaths. Or you may not. It does not matter so long as they are at peace.

When their PALS is comfortable and deeply asleep, the caregiver can stop the machine and remove the mask. That part avoids prolonging what isn't really "living" any more. And in that moment, that person provides the last, best gift: a peaceful death.

Legal & Religious Considerations
Other than select countries and states, the laws in the US and other countries prohibit the administration of drugs or other means as a way to actively end life. However, major world religions, including Catholicism, Hindi, Islam, Judaism, Protestantism, and others are in accord with the principle of avoiding preventable suffering when there is no hope of changing the course of disease or injury.

This is a society of constant war and the most fearsome weapons. Whatever you believe created those or made them possible, whether human or divine, wouldn't that same power also support the peace that represents the end of suffering from an incurable disease?

Though no professional legal advice is offered here, to my knowledge, no caregiver has ever been prosecuted for administering drugs with that intent, knowing that is the PALS' wish.

Having documentation in place as to the person's wishes, however, is always desirable, especially in cases where a coroner's representative or law enforcement officer may wish to see it. For example, when my husband died, since he was not enrolled in hospice, the paramedic that pronounced him dead did ask for a copy of his advance directive.

If/when all breaths are being triggered by a machine "backup rate" (where the machine starts breaths so the person is getting a minimum number of breaths per minute) substantively the PALS is being “kept alive by a machine.” To the extent that a PALS has previously specified that such is not their wish, ending BiPAP support in this scenario is fully compliant with the advance directive.

In ALS, especially if a PALS is relatively new to morphine, titration to "full comfort" may easily amount to end of life, which may be acceptable to someone who does not wish to survive indefinitely with any level of intractable air hunger.

Since severe air hunger that can no longer be controlled with BiPAP signals the end of life, arguably titrating morphine to comfort is not actually hastening death — it is simply making it more comfortable.

What to Avoid
Don’t call EMTs for transport unless you would be OK with hospital admission — most often, admission will be recommended once you arrive, and it's very unlikely that EMTs can fix the problem without transporting the PALS to the hospital.

Never leave a PALS alone in a hospital, least of all in ER. A joint can be dislocated by a careless blood draw. A BiPAP can be accidentally disconnected. A drug order can have the decimal point in the wrong place. Two of the three have happened to PALS I know, and the third was narrowly avoided by, you guessed it, a caregiver.

Don’t go to any ER where you wouldn't want to be admitted. You have the right to select any hospital for stabilization in an emergency, whether in or out of your network, and you can ask the EMTs to take you to the ED of your choice. However, you may have to fight your plan over what was a true emergency if you go to a non-network hospital.

Hospice
As noted above, you do not need to sign on to hospice for the death you want. I've helped people who used hospice and those, like us, that did not. If you are interested in what's involved, ask around and interview the agencies that you are interested in, that are in your network. Get all major equipment if/before you sign on the dotted line. Medicare does not fund equipment for those in hospice, and hospice agencies get only a small monthly payment for hospice patients no matter how many resources you use.

Just know that hospice staff, if present in the home, are typically trained to deliver morphine as injections at preset intervals since most cancer patients, the bulk of their clientele, don't have a feeding tube and often find swallowing difficult. And they are not going to deliver fatal doses, even under legal programs. Their goal is often not your goal. Of course, there are exceptions and if hospice can support a self-directed death, that's great. Just don't expect that.

Remember that any physician and many other types of clinicians can prescribe the opioids that are often used to reduce air hunger, pain, and anxiety at the end of life. Any such legitimate prescriber will want to have seen the PALS in person in the last year.

VSED
The media have popularized the option of "Voluntarily Stopping Eating and Drinking" (VSED) as a gentle way to die.

It can be hellish. It generally takes days. And it's completely unnecessary. And it is far from the only legal way to self-direct death.

Is that the death you would impose on a dog or cat? A horse or cow?

Titrating Medication Is Clinical Treatment
If someone considers their life over, simply titrating medication to full comfort, basically taking pain and air hunger as symptoms that you are treating, may hasten death. But that is not the goal. The goal is lack of pain and lack of air hunger. That's the care plan, same as it would be if someone were dying in ICU.

Many people were brought up to believe that "only God can take a life" or "we must wait for nature to take its course." I have worked in health care for more than 40 years and have never seen anyone but people deliver lifesaving interventions and withdraw life support. These are decisions that are made in hospitals, assisted living facilities, nursing homes, and yes, residential homes like yours every day. They're made by imperfect humans to ease an only-human passage into peace.

MAID & "Death with Dignity" Laws
In every country, there is a doctor willing to prescribe appropriate medication to address air hunger at the end of life, if that is the exact request that you make.

I see P/CALS dooming themselves to pointless suffering because they do not have the "death with dignity" laws wherever they are and believe they could be doing something wrong by hastening death. Some people are raised to believe, whether based on religion or law, that they lack that freedom.

With a willing CALS to work with you on "DIY hospice," titrating meds to full comfort, you do not need these laws. Some people may prefer to use them, but they entail a lot of steps, may therefore prolong suffering, and some still require self-dosing, pretty silly in ALS.

That said, some people prefer operating within these programs. If you go that route and worry about "self-administration," just plan to have your caregiver cover your hand with theirs and move their/your hand as necessary.

Questions?
Let me know if you need help or advice. No question is too big or small.