Dying is a deeply personal experience. It’s something we all have to do alone, but if we’re lucky, our loved ones will be there for us when we pass over to the other side (if there is another side). But how do family members and friends learn how to help someone die? There’s no class for that. And if there were, would anyone want to sign up for it? Most of us are happy to stay in a deep state of denial about our own demise, or God forbid, the demise of someone we love.
So that leaves us without much instruction about how to help our loved ones in their final days. Some of the things we might naturally want to do could agitate them or even keep them lingering long past the point at which their bodies can stand the pain. Is the love we give at the end of life comforting, or could it be causing our loved ones harm?
Grace Kurowski has experienced more death and dying in her ten years as a hospice nurse than most of us could ever imagine (or would want to). Her work has given her a unique perspective in terms of how to care for someone at the end of their life. Here’s one of her most important lessons:
You can’t assume to know what someone feels when they are dying.
I was surprised by how much I didn’t know about the process of dying. And it was fascinating to learn how people from different cultures and backgrounds cope with the death of a loved one. Grace isn’t a teacher, but there’s a lot to learn from her experience, including letting go of the fear of hospice.
A lot of patients and family members don’t even want to say the word hospice because it makes them feel like they are giving up on the patient. They are accepting death. They are giving up hope. And that’s not what you’re doing. You’re being prepared for any situation.
Grace has much more to share, but before we start, there are a few terms to know:
Hospice is generally regarded as end-of-life care given to a patient either in their home or a facility that provides a home-like setting.
Ativan is a sedative. It’s used to relieve anxiety and treat seizure disorders.
Morphine is a narcotic used to treat severe pain. It’s often given to those who are dying.
GRACE, A HOSPICE NURSE
(she has the perfect name for a hospice nurse)
Grace and I spent some time talking about what happens when the body dies and how family members can best help their loved ones exit this world. I’ve transcribed some of our conversation below. You’ll have to press play to hear all of her powerful words.
What is the goal of hospice?
The goal of hospice is to get the pain and agitation out of the patient’s way so that they can live the remainder of their life. If they are not wasting their energy on pain and agitation, they can spend that energy being aware of the people around them, being aware of sounds that are familiar to them, and being comforted by their surroundings while they die. That’s how I would want to use my energy if I was dying, and I really wouldn’t want to waste it on distractions like pain and agitation. That’s the thing, we [as hospice nurses] are distraction removers.
What happens physically to the body when it dies?
There are some similarities for everyone. They’ll stop communicating and the digestive system simply won’t work. There are chemicals that get released in the brain that will help you stay calm and relaxed. In my personal experience, usually that’s not enough to keep patients comfortable when they are declining, especially if they have cancer, or other painful diseases. There are a lot of them.
What are some of those diseases?
You go nasty if you have emphysema. You go into the breathing that you go into when you’re about to die really early and you stay there for longer.
Has anyone told you what that feels like?
No. They can’t talk by then. That’s the biggest challenge of hospice. You have to realize these patients cannot talk. When they really start their process, you have to go off observable signs. So that’s where you start to have conflict with the family.
Because the family’s going to say, “No, no, no, my mom didn’t want to have any drugs before she went.”
I’m like, okay, “Um, can we ask her again? I know you’re in a lot of pain, can I give you some morphine?” Sometimes I’ll get a yes.
And then the daughter or son will go, “No, no, no, she doesn’t mean that, she’s not herself right now.”
“Yes, exactly. She’s not herself right now.”
And there’s also in theory what you think you want and then when you’re in the situation, what you want and then, what you need.
You can’t assume to know what someone feels when they are dying.
Grace doesn’t support continuous care for hospice patients.
It’s nice to have a nurse sitting next to your dying loved one. But your dying loved one is going to be aware of it. They are aware that a stranger is next to them.
Do you see a difference in terms of the way families react and respond to their loved ones dying? Is there any difference in terms of socio-economic background?
Oh God yes, always. Occasionally I work in Beverly Hills or Bel-Air. It’s a 50/50 shot when I’m working in those neighborhoods. Sometimes the family is educated about hospice and aware; sometimes they refuse to be educated.
The family sees a change, they get scared, and they call hospice. I’ll tell them the signs they are seeing are indicative of active death. Half the time when I’m working in the richer neighborhoods, they either don’t believe me or they try to make a deal with me to get the patient out of it.
The families might say, “Well, if we hold off on the morphine, how long do we have?”
Noooo. Death is not going to stop because you don’t give morphine. You give morphine because death is happening. We give it for respiratory distress or we give it for pain.
The family will say, “Well, they never needed that before.”
No, they didn’t, because they are dying now. They are trying to convince me that it’s not happening. And I’m trying to tell them it’s not me you have to convince. You’re talking about death here.
Are they trying to control the situation and stop death?
I assume. I just know that they don’t want to believe me. And I understand that that’s a terrifying loss of control. Of course, I can empathize with that. But there comes a point when you have to just start believing your hospice nurse because we’re probably not going to lie to you.
Grace gives an example of a daughter so distressed about her mother’s condition, she pressured Grace to change her prognosis. The daughter wanted Grace to tell her that her mom would last a month. Finally, Grace acquiesced, even though she suspected the mother was close to dying. It was a valuable teaching moment for Grace.
If there is any false hope, you have to crush it immediately. You have to do it for the sake of your patient and the sake of the family members.
If you start telling even white lies like that, you will destroy them when it’s time for the patient to die.
Do you have to play the role of therapist?
My job is to be an advocate for the patient. So if a family wants to sit next to their loved one and “pet” their hand, they need to know it can agitate their loved one. It can be too much stimulus.
If you have someone continuously touching you, and your body is trying to die, and end, and you keep waking it up, and waking it up, you’re not only exhausting the patient, you’re causing discomfort.
Because that patient doesn’t really have a lot of ways to communicate left, but that patient knows that someone is petting [their hand] and someone can’t handle the fact that they are leaving. So that patient will linger in pain longer than they should, longer than their body wants to allow, and that’s cruel.
I understand that it’s horrible to lose a family member, but it’s horribly selfish to try and get that family member to stay when their bodies are demanding that they go. And you know their bodies are demanding that they go when your hospice nurse tells you. That’s why you need hospice.
Grace strongly advices against an IV for patients in hospice.
If you have a loved one on hospice, don’t use an IV. Because when the kidneys stop working, that fluid has to go somewhere and it’s usually going to go into the tissue, making you huge and edematous. You blow up like a balloon and then it goes into your lungs and you have a lot of pain and suffering when you start dying. You can’t do an IV on hospice. Don’t do it.
People think, “No, they’re not eating. They’re not swallowing.”
They’re not swallowing because their body is refusing food. The swallowing reflex goes. It goes away for a reason. There’s a point when when a human being tries to swallow food and they can’t. They cough. They choke on it because the swallowing reflex goes. And that’s your body’s way of telling you, “I’m done.”
Do you think that we are a little uneducated about death, about the process of dying? How many people know what’s [actually] happening with the body when it’s dying and know what they are supposed to do, and maybe what they’re not supposed to do? Are you starting from scratch every time?
Every time. There’s no public education that I’m aware of about hospice.
What are some of the physical signs of death?
In addition to not eating and sleeping a lot, Grace notices that many of her patients say the word “go” before they die.
They may say, “Let’s go!” or “I have to go!” They won’t remember where they need to go or why they need to go there. They just have the sensation that they need to get up and go. If they can’t physically get up and go, they may move around in bed every 3-5 seconds.
Imagine being uncomfortable in bed. If you’re uncomfortable in bed, you turn over, you readjust, and go back to sleep. Imagine not being able to readjust and get comfortable and go back to sleep. You move quite literally every 3-5 seconds.
Have you seen patients fight to stay because of a loved one?
Oh yeah, all the time. That’s why you have to talk to family members so that they’re calm.
Because if they are screaming when that family member starts to go, that’s going to make that dying patient struggle. They’re going to want to linger. Their family members are hurting and it’s a human instinct to want to help your loved ones, even when you’re dying.
It’s a nice image to imagine everybody by your bedside and your family members are all there when you’re passing, but…
you’re not going to notice them when you’re passing, you’re going to be too involved in your own process. And if you’re used to having a bunch of people around you, that might be ideal for you. But if you usually sleep alone, a lot of people, from my observations, are more comfortable [dying] alone.
Grace wants to change the stigma around hospice.
Why wouldn’t you have a service that’s usually covered by insurance, if you have a bad enough disease, where a nurse can come to your house? You can have a nurse come to your house! You can ask her, “Are we getting close?” And she can say yes or no. She cannot tell you how long they have. There’s no predicting that.
The final moments
Listen to hear Grace describe what it’s like to witness someone in their final moments.
Grace cautions against staying up 24/7 sitting by a loved one’s bedside waiting for them to die. It may seem deeply unnatural, but she believes it doesn’t benefit you or the patient. These changes can take hours or days, and if you exhaust yourself, you can’t take care of yourself or a patient.
You can’t take care of someone if you don’t take care of yourself first. You have to eat. You have to sleep. And you have to get a caregiver if you can’t move your patient. Most people are so afraid of getting caregivers and letting people into their home, or God forbid putting their family member into a nursing home, but you know what, nursing homes have able-bodied caregivers and nurses who can move your patient.
What’s the hardest part of your job?
I think it changes over the years. It used to be dealing with family members, but now it’s just the drive. The most I’ve driven in one weekend is 540 miles. You go where your patients need you to go.
Can you give an example of a situation where death was handled really well?
Yes. There was this wonderful Mexican Catholic family. They understood death was coming and they listened to me when I said,
“Alright, there are a lot of people in the room. There’s a lot of noise. Do you see how they are lifting their hands and making noise?”
“Well, he’s trying to talk to us.”
“Yes, exactly, he’s trying to talk to you because he hears you, but he doesn’t have the energy to talk to you. So he’s going to struggle because you’re talking to him and he desperately wants to respond, but he can’t. That’s what’s causing the distress.”
And they allowed me to give him morphine and they coped. They sat there and they ate and they kept an eye on him and they were there for each other. And when he died everybody started singing. It was a tradition in their family to sing and to keep the body until sunup. They sang all night and they put flowers around him.
It was the best thing I’ve ever seen [she starts to get emotional]. A lot of times when I see patients go, the family members put their needs, not on purpose, but they put their needs before the patient because they can’t handle the thought of that patient not existing anymore.
And what I try to teach them, and sometimes I succeed and sometimes I fail, is they don’t have control over the situation. They can’t fix this. They can cope with it. It’s never going to be easy for the family members. I can make it easy for the patient. There are medications for that, but there’s no cure for heartbreak and loss. That’s going to happen and it must happen. You must emotionally process this. You have to cry.
And that Mexican family just understood that and they immediately started processing right after the patient went.
Why was that so emotional for you when you were talking about how they really respected the patient?
Because it doesn’t happen often. It’s emotional for me because it’s all you can do for a person at the end.
At the end of someone’s life, they are going to go through whatever it is they’ve gone through in their life. It’s the reason why you should be a good person and why you should be compassionate and why you should feel because when you break down, you’re breaking down with your own memories. The memories that are the most frequent or the most potent usually are the ones that come up. I see a lot of people say names when they go that are really important to them.
I saw a man scream what I later found out was his son’s name as he was going. He would say, “I’m sorry. I’m sorry.” It turned out that that was his gay son that he disowned.
If you fuck up, it’s going to follow you to your grave. If you fuck up badly enough, you’ll remember it on your deathbed. It should be enough to get people to go, “Wow, maybe I should pay attention to how to be a good person.”
Have you seen a situation where people die peacefully, or not need morphine?
Most patients need morphine or Ativan or both. I had one situation with a Buddhist patient who actually had six or seven monks around her chanting as she was going. And they did it for hours and hours and hours and she meditated her way off this Earth and she didn’t need a drop of anything. But this is someone who really focused on mindful meditation every single day.
If you’re at that level, if you’re a pro athlete, like a professional ballet dancer who has taken care of their body wisely their entire life, any person who has taken really good care of their body usually goes better.
I’d be curious if you didn’t give people drugs, how long the suffering would go on for?
Hours. I’ve done that before because the family didn’t want to give morphine. If you let pain develop to point where they are moaning, it can take nine hours for them to calm down. Usually that doesn’t happen, but in extreme cases you have to give the drugs and wait and listen to the screaming.
That’s why I don’t do continuous care anymore. I can’t. It’s given me IBS [irritable bowel syndrome]. I’ve had to go through therapy because you have to sit there and listen to them scream and wait for the drugs to work. And that’s the thing, if you put off giving the drugs for too long, it takes so much longer for the drugs to work.
Grace once had a patient with seizure disorders. The patient started to seize and Grace knew the patent was going, but she she couldn’t make a sound because if she did, the family would come running.
And they would see that, and to make them see that would be too cruel. So you just watch, and it must have taken three or four minutes.
Is that a helpless feeling?
Of course it is. That’s the thing, morphine is a powerful drug, but it’s not going to solve everything. There are patients that don’t react to it. There are a lot of patients that are allergic to Ativan. Usually it works, but when it doesn’t, you’re going to remember those times. I’m going to remember the patient who seized to death for the rest of my life.
Do you receive gratitude, or are people unable to give it to you in these moments?
Oh, of course. They always say thank you. They are very grateful for your help, but they never want to see you again [laughing]. You have deeply intense emotional experiences with families and then you forget them for the sake of your own preservation and sanity.
They all stick with me, but it’s not like a horror thing. It’s not like they’re ghosts that haunt me. They’re life lessons. They’re experiences that I’ve had. They are failures and successes. They are things I’ll remember on my deathbed.
Speaking of ghosts, do you ever feel anything after someone passes?
No. You can see the life go out of someone. And people may have the urge to open a window. I tell people to follow their instincts because it’s an emotional process, so you should go off your emotions.
Do people who are dying go through a second wind?
Sometimes you’ll get—most of the time with cancer patients—like a last burst of energy. They sit up and say, I want a cigarette or a cheeseburger. They sit up and take a puff of a cigarette or have a bite of cheeseburger and die within 24 hours.
It’s kind of delightful to see the desires that permeate to the end. That’s one thing I really do enjoy about being a hospice nurse, is that I think it’s the only type of nursing where you get to do what your patient wants. When you’re a nurse, in most other fields, you have to do what your patients needs.
You can’t give them a cigarette. [laughing]
Of course not! [laughing] But that’s the thing, my patient’s dying. This is comfort care. I do whatever makes them comfortable. And that’s wonderful. I get to spoil my patients. That’s lovely for me.
Is there anything you would want to say or tell the family members, anything else that we haven’t talked about in terms of practically what to do?
Get hospice as soon as you can, especially if your insurance will pay for it.
Don’t be afraid to talk about death. Don’t be afraid to talk about decline. That doesn’t mean that you’re giving up on anything. That means that you are being prepared for anything.
Hospice is exhausting, so be nice to your hospice nurse. Realize that when she got to your house, she probably just drove 35 miles, maybe 50. So when she gets there, she’s going to tell you the truth and it’s not her fault.
Image of woman with butterflies yulkapopkova @iStock.
