What to Expect When Your Parent Is Dying

A conversation with a hospice director

Lindsay Robertson
Aug 22, 2018 · 6 min read
Credit: LPETTET/E+/Getty

In the last days and hours of my mom’s life, a lot of stuff came up that I wasn’t prepared for: deciding between keeping her in the hospital versus taking her home for hospice care, or even knowing what hospice care involved. I also didn’t know what to expect about the actual dying process. That would have been really nice to know.

While many of us will lose our parents in a more sudden way, many will also end up using hospice. Either way, it’s good to have a handle on what the last days are like for a parent dying of an illness. To get this perspective, I spoke with Joe Feuerstein, MD, an associate professor of clinical medicine at Columbia University and medical director of two hospices, about, well, death stuff.

What is hospice, and how is it different from the hospital?

Joe Feuerstein, MD: Hospice is a service for people who are in a terminal state. In other words, their life expectancy is less than six months. It’s paid for by Medicare.

A physician will evaluate the person, and based on that evaluation, if the physician thinks this person will have a terminal event within the next six months, they will be eligible for hospice.

Hospice is different in that a hospital is an acute medical center where they’re trying to treat and heal, whereas a hospice service is not going to improve your health, because we understand that it’s not possible, but we are going to help with quality of life.

We’re not really taking vital signs the way they do constantly in hospitals, with blood draws every morning. None of that happens, because we want to give time for the family and the patient. And we want to give the patient peace, because the patient is transitioning.

Most patients are at home or in a nursing home or inpatient hospice.

What’s the difference between home and inpatient hospices, which are usually based in medical facilities?

Inpatient hospices are for patients who are much further along in the process. Remembering that hospice is for patients who will pass away in the next six months, you’re not going to be in an inpatient hospice for six months, but you might be there for a couple weeks toward the end, especially if we’re having problems controlling symptoms and you’re uncomfortable. Because this is 100 percent about comfort.

What is palliative care, and what kind of medications are involved?

Palliative care is a multidisciplinary approach to help patients with end-of-life care.

Basically, morphine solution is used all the time. It’s very good for air hunger, which is where the person isn’t breathing very well, and people do get short of breath at the end. Their lungs aren’t working so well anymore, and the carbon dioxide is starting to go up. They might become quite air hungry, and if that happens, morphine is great for that. Ativan is used all the time for agitation, because you want to be calm and not anxious.

And then we use scopolamine, which is a medicine for secretions. It’s the body shutting down, so you’re not clearing secretions like you would normally. Just imagine being unable to breathe, anxious, with loads of secretions. That’s unacceptable, so we just medicate all that.

And the other thing is that if the family is really unable to cope [with the patient at home], inpatient hospice might be the answer.

What should the family expect from in-home hospice?

We have to make sure the family is capable of giving hospice service when we’re not there. So there’s actually a lockbox with medication, some of which are controlled, and we instruct the family on how to administer them.

Hospice nurses come two times a week to evaluate the patient, and then we have home health aides who will come to bathe and shower the patient. We have spiritual and psychological counseling and a social worker, because this is obviously very difficult, and there are lots of social-dynamic issues when people are passing. We also have bereavement counseling—up to a year after the person has passed, the family can still get help coping with loss from social workers and spiritual counselors.

Can you take us through the process of dying, starting at, say, three months out?

The first period is actually 90 days, and there are a lot of emotions that go on.

Firstly, a lot of family dynamics can get very strained for obvious reasons. Because there’s fear and anxiety about what’s going to happen. If there were issues before, this is probably one of the biggest stress tests for that. If there are family dynamic issues, you’re going to see them.

There is usually a lot of sleepiness. Sleeping goes from a more normal six or eight hours to 16 or 18 hours. So, a lot of the time, [the patient] is sleeping.

But a lot of patients will have better days toward the end, where they’ll rally. They don’t all do it, but I’ve seen this many times. And it’s really a lovely thing, because that allows for some opportunities with family, and I’m not a psychologist, [but] the closure is so massive.

Can you describe the last 24 hours or so of the terminal patient’s life typically? How is it different from movies and TV?

Unlike in movies, real death is a slower process, and people are often not talking up until the end.

There is the sleepiness I mentioned. They might sometimes moan from something called terminal agitation, but a lot of the time they literally just get quieter and quieter, softer and softer.

The breathing becomes more shallow; the patient becomes nonverbal and doesn’t respond to any stimuli. And then, if you’re in the hospital, you can see that their oxygen levels start to go down and their vital signs start to diminish.

Some go peacefully, and some will have more breathing issues—the air hunger part or the anxiety and agitation part—which is what we medicate for. If they’re going quietly and slowly, then you just watch this happen. And the process transitions. It’s actually a very gentle thing.

One thing I experienced with my mom was that it felt like such a great honor to be there with her. Do you find family members expressing something like that? That it was such a deep honor to be with the person at the moment of the end of their life?

People say many, many things very similar to that when it’s a good transition. This is the most beautiful transition, and something that everyone’s going to go through. It’s very natural. It’s not a scary thing; it’s a transition to something else. And it should be an honor. And it really is.

Actually, I’m quite [religiously] observant, so when I used to have to go in and see the patient and they had died, I would always put my hand on them and say, “Go in peace.” It’s a very holy thing, and it’s quite beautiful when done properly.

The most important part of the transition period is that there’s someone around. With every single patient, when I’m told that they’ve passed away, I want to know: Was it peaceful, and were they with family? I don’t think anyone should die alone, if possible. If a loved one is there, even if you’re in the back of a shed, you’re not alone.

Do you have any advice for people going through this who feel out of their depth?

I would just say that you should get hospice early, because our hospice nurses are lovely, good people. They’re trying to make this a soft and gentle process — and it is a process — that every single person will go through. They’re trying to make it as peaceful and happy as it can be. That’s what the whole experience of hospice is supposed to be when it’s done properly.

This happens to everybody. Don’t be scared.

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