End-of-Life Tips
The "Death Rattle"
(Note that this doesn’t always happen)
I want to (in my terms) explain the "death rattle", which by the way I think is an awful term, and I wish they would call it something else. I have come to believe that it bothers us more than them. It usually happens at the end of life because our ability to swallow is reduced and we are unable to cough or bring secretions (saliva/phlegm) up or down so it hovers there and will sometimes make a loud vibrating sound, that sounds like rattling, or gurgling.
Please do not rush to get a suction machine or medications like Atropine. First try to reposition them on their side. Sometimes, that alone can move the secretions just enough to quiet the noise... which again bothers us more than them. Repositioning is oftentimes the remedy.
If the secretions are filling their mouth, even spilling out, a suction machine is useful, but I want you to imagine what it must be like for the person lying in the bed. The noise is awful in itself, but the suctioning tool is so uncomfortable, and when you are dying, that is the last thing you want happening to you. Try and use mouth swabs to remove the secretions manually first... please... it is so much gentler and far kinder.
Medications like Atropine are effective, but usually more effective when the secretions are pooling in the mouth. A suction machine is also helpful in that same way. Neither are very helpful when the secretions are down the throat and just hovering there. This is why I believe repositioning is the best first thing to try.
My hope in sharing some of these tips/tools is to relieve your fear, and to help you be better prepared for what happens when we die. To be present for someone when they are dying, means to witness the ways our bodies shut down. It can be messy; it can even be a little scary... but our bodies know what to do and the things we experience are a natural part of the dying process.
Sometimes, I just lean in... I place my hand on their back and rub it gently, whispering... "it's okay, I am right here... I got you... you are not alone." And that... comforts them. Trust your words, your heart and your touch... it is amazing what comfort these can bring.
Medications
I will start by saying that I am not a big of fan of medication. What that means, is that it is not usually my first go-to, because I would like to think there are other things we can do first to try and relieve distress, discomfort and/or suffering. However, having said that, medication is important to have on hand and will oftentimes be the difference between pain and peaceful.
A comment I hear often is the connection between hospice, morphine, and death. I have heard people say that their loved one died when they were given morphine. I have not been in your shoes, I wasn’t there when this might have happened, so I can only speak from my own experience and for what I have seen.
The medications commonly used at the end-of-life are Morphine, Methadone, Lorazepam (Ativan) and Haloperidol (Haldol). These are the ones I am most familiar with, however there are others. For now I will start with these. I am not afraid of these medications, because I have seen them work effectively and I rely on them. I am not afraid of someone becoming addicted, and I encourage you to remove that from the things that you are afraid of. If someone is at the end of their life, becoming addicted would be the last thing I would worry about, especially if they bring comfort. I am also comfortable with using these medications together, I say “they are good friends, they play nicely together.” What this means is that when given together, they can provide more comfort and relief. For instance… if there is pain, it enhances the agitation and anxiety. If Morphine and Lorazepam are given together (for instance), they can reduce both (most of the time).
More is not always better. Our bodies react differently to medication, so we cannot assume that what worked for one person will work for another. This also means that we tolerate doses differently as well; for instance, one person can take Lorazepam and feel relaxed and calm shortly after and even for several hours, while another person might sleep for an entire day. This cannot be predicted. I like to wait to see how medication works before immediately giving another dose. I have witnessed someone with pain have their pain increased with more pain medication, so again, more is not always better.
Things to be mindful of when using these medications: Constipation is a common side effect, but the one I usually look for is the dry eyes, the dry mouth, and the reddened and warm cheeks because this can be so uncomfortable to someone who is dying. This is where you come in… offer a cold compress on the cheeks and eyes, or wetting eye drops for the eyes (check with the doctor first), and even just one drop of water is comforting to a dry mouth, but please always be mindful of their swallowing ability. If they are alert and oriented, I suggest sugar-free sucking candies or watermelon… both comfort a dry mouth.
Can someone die after taking these medications. Yes. Did you or your doctor or nurse end their life by giving it to them? In my own experience I will say no. Sometimes people are struggling so much, and they are given medication and they die after. My rationale for this is that the medication allowed them to succumb and give into what was already happening to them, allowing their body to finally let go, give in, and find peace. Their diagnosis and disease process ended their life, the medication just gave their body permission to let go. At least that is how I feel…
If you are afraid of medications being prescribed to someone you love, ask for more information. Not only are you this person's advocate but you will carry this memory with you for the rest of your life and you need to know you did right by them. And if you are the doctor or nurse suggesting a medication, please offer as much information to the family as you can, allowing them to feel confident in what is being suggested. Education is so important, and can many times relieve people of their fear.
Medication is scary, and most people equate it to addiction and death, so I make it a point to do my best to remove these worries from the people who are about to say goodbye to someone they love.
Visions, Voices and Visitors
Pretend for a moment that anything is possible, and our role is not to prove someone wrong, but to instead support them if it brings them comfort. Let’s place scientific proof, endless data, and opinions of others aside for now… These are just my opinions, what I have witnessed, and how I feel about this topic personally.
I visited a man a few weeks before he died. He told me that his dogs, both of which died years ago and years apart, had started to visit him. His question was, “does this mean I am close to death?” I first asked about the dogs, their names and whether they were alive at the same time, and how it felt to have them there. He was so pleased they were there, and he told me that they didn’t get along well when they were alive and the older one died about a week after he got the second, so they didn’t have a lot of time together, but now, as they lay on his bed, they were the best of friends. I explained to him that it is my opinion that when someone is near death, they are more open, perhaps spiritually, maybe intuitively, to welcoming the things we cannot see or hear. I told him that from my experience it doesn’t necessarily determine his timeframe, but that it was my opinion he was close. On the day he died, I was there with him. I asked him if the dogs were there; he patted the bedside (as if to pat them), smiled, and said, “yes.” He died about an hour later.
I have witnessed many people seeing friends or family members that have passed away, people they didn’t know, one even told me Jerry Garcia played music at her bedside. I have only witnessed one person fearful of what she saw, because it was so startling to her, but soon after, she found comfort with the visits from the stranger. People who can verbalize and are alert and oriented, share their stories with me and I sit, almost child-like at their bedside, eager and excited for every word. Because to me, I see the comfort this brings, but I am also so curious, and I want to learn more. In many ways it is a hand stretched out, with someone saying, “I will take your hand and join you on this next part of your journey, so you do not have to do it alone.” This works for me.
Some people are no longer verbal, but I can tell they either see or hear something, by the way they gaze (usually at the wall or ceiling), with glazed eyes and appear almost checked out, but peaceful. Family members are worried, they don’t understand, most cannot accept it to be true, so they want to talk them out of what they see or hear, convince them they are wrong, or even medicate them out of their “hallucinations.” I can appreciate the discomfort the unknown can bring, so I always take time to help those at the bedside feel a little more accepting, and hopefully less fearful.
I have learned that some people can have these visions or hear voices months before they die, some it only happens hours or days before, so this cannot be predictable. Most people do not struggle or feel fear, and for the most part find comfort, safety, and peace. I always encourage families to just listen, ask questions like, “what do they say?” or “what are they wearing?” If you leave the door open for them to trust you with what they see or hear, they will be more inclined to include you… and trust me, you want to be included.
There is a darker more uncomfortable aspect to this, which some of you might have witnessed. Terminal delirium is a real thing, hallucinations can happen, and fear is difficult to watch. This is that time when it is so important to talk to the doctors and ask what you can do, and most times, medication is key, so my advice is to trust that. Our role as a bedside guide, in any capacity, is to relieve fear, so be sure to honor them by being their fierce advocate.
Whether there is a curtain, a veil, or a sparkly silk cloth that comes between us and whatever is waiting for us on the other side, if someone hears a comforting voice or sees an outstretched hand offering safety on their journey, I believe our role is simply to thank them for being there, and feel comforted that someone you love, has a companion to take those next steps with. Instead of questioning or correcting… ask questions and offer them a safe place to talk about the mysteries and magic of the dying process.
Can they hear us?
When my parents died, a few years a part, I was present for both, but only physically. I didn’t know what to say or what to do and no one was there to guide me. Twenty-five years later I am a hospice nurse and the thing I think I do best is provide bedside support to patients and those who are saying goodbye. I always encourage people to say “the things” at the bedside, because I believe if they are said, there will be less regret and possibly even less grief, that they will have to carry the rest of their lives. If I knew then what I know now, I would have sat at my parent’s bedsides and at the very least, said goodbye. I have spent all these years wishing I had said the things.
The first advice I want to give you, is to not wait for the bedside to “say the things." Say them now, when you have a chance. Imagine if you didn’t have years’ worth of held-onto feelings in those last moments, and you could instead simply use that time to say I love you, thank you, and goodbye.
The question that I am asked quite often, is “can they hear me?” I have heard that the hearing ability seems to become heightened at the end of life, but I don’t think that is why they hear us. I think it is our love for one another, our history, our life experiences, our spiritual connection, and the magic and wonder that happens at the end of life when two people have to say goodbye. They hear us, because they feel us and they know we are there and somehow everything we think, feel, and say is handed over to them. I think they need to hear those last words as much as we need to say them, so that is enough for me to be absolutely certain that whatever is said moments before last breaths are taken, are without a doubt heard. Trust that.
While I wish everyone said “the things” way before they find themselves about to say goodbye, I will always encourage people to say whatever they need to before last breaths are taken. I imagine their words as a take-away, a beautifully wrapped gift for the person who is dying, to take with them when they go.
Sometimes there is history that is not pleasant, perhaps years of disconnect prior to this bedside moment, which means there are years of unsaid words that there will never be enough time for. But what if you apologized, forgave, or made amends and what comfort that might bring. And if the damage and pain is too deep, what if you simply wished them peace, and said goodbye. This is not a moment to make up for lost time, it is a moment to let go and say goodbye, for you and for them.
I believe that people who are dying need to know a few things; that the people they love will be cared for well, that their name will always be said, and that their legacy will be carried on for many lifetimes. And they need to know, without any doubt, that they were loved. Imagine if we just said those things.
When you ask me if they can hear you (us), especially when they are non-verbal and cannot respond, my answer will always be yes. You may not get a smile, or opened eyes, you may not hear words in response to yours, or feel a tightly squeezed hand… but I can assure you that whatever you say will be received and it will be the last gift you give them.
So, if you find yourself at the bedside of someone who is dying and you love them, let them know, and tell them their life mattered, wish them a safe journey, and say goodbye, because they deserve that. They hear you; I believe this with every ounce of my being.
Signs that someone is near death
I have witnessed hundreds of last breaths and the one thing I am sure of, is that people do not die the same way. There are many similarities, but I have learned that you shouldn’t sit and wait for a specific sign to let you know that someone is about to die. I have heard someone say, “their nailbeds aren’t blue, so they aren’t close.” That person died two hours later.
Nailbeds do turn blue, and the hands and feet can become cool to touch at the end of a life; this can be due to the oxygen level dropping, which is a common sign, but does not always happen. Sometimes their hands and feet are warm up to the last moments before they die. Mottling, purplish or blotchy red/blue coloring on legs or feet, can happen, and is a sign that someone might be close, however it too could never happen.
I have stopped counting on vital signs and will rarely take them, because I find that they can be wrong or misleading and I see the stress it causes families when they stare at the pulse-oximeter every twenty minutes. I never understand why people take blood pressure readings near the end either. When someone is dying, the blood pressure will go down, but do we need to squeeze someone’s arm tightly while they are in the middle of their dying process to confirm that? I don’t think so.
There are many things I look for, that are signs that someone is actively dying, but I never assume one or all will happen. I make sure the families are prepared and know what they can expect to see, because it helps to relieve the fear that can happen at the bedside. Certain signs of death can be scary if no one is prepared.
The dying process and the way the body moves through it, is miraculous. I believe the body knows what to do, and we need to trust that. There are sounds, there are movements, and it can sometimes be frightening, but the sounds and movements are normal and are all a part of the different ways our bodies shut down at the end of life.
I always look in their eyes… they tell me everything. Glazed and glossy tells me they might be close, and when they look as if they are staring beyond you, at something that is a million miles away, that is a sign for me.
Apnea is a very common sign. This is when they hold their breath, which at first can be 10-15 seconds and a few minutes apart. The first time you witness this, you think to yourself, “this is it,” and then they take in a big gasp of breath and go back to their breathing pattern. I have a three-minute rule and do not assume anything until it has been three minutes. When they start to hold their breath for longer periods of time, and it begins to happen closer together, that is a sign for me that they are close.
Shallow breathing is a sign that I look for, and mouth breathing, which reminds me of what a fish might do if out of water, is when I know they are very close, and I try to bring the family in.
I always educate the family and let them know about the death rattle, mottling, low oxygen, apnea, body movements, and breathing changes because I want them to be prepared. When it comes down to the last days and hours, the timing is unpredictable… it could happen quickly and quietly and take you by surprise, or they can experience everything that I have mentioned and linger for days. My advice is to not sit and wait for something to happen, but to instead be prepared that it all will. And moments before that last breath is taken, all that really matters is that you are there and that they are cared for well.
When I start seeing signs that might indicate they are close, I tell the family to assume today is the last day; to sit at the bedside, to say the things, to be fully present and to comfort and support them in whatever ways they might need. And if they are still with us tomorrow, that is a bonus day (more time with them) and you do it all over again. This way they are prepared that it could be hours or days, and less shocked or surprised with the outcome.
There have been times when I have brought the family in, moments before someone takes their last breath, so they can gather to say goodbye; these are beautiful moments. But over time, what I have come to realize is most important, is how prepared someone is for the different ways the human body shuts down. Removing that fear can soften the reaction when someone dies, but remember, no matter how prepared we are, when that last breath is taken, it is as though we had absolutely no idea it was coming.
Should we talk to the kids about death and dying?
I had my granddaughter over one day and we were coloring when my phone rang. It was the daughter of a patient calling to let me know her mother had died. When I got off the phone I started to cry. My granddaughter asked me what happened, so I told her that someone had died. She asked me why I was crying, and said, “do you love her?” This started the conversation about the work I do, and the reaction I have when someone dies. She equated sadness at death to losing someone (or something) you love. That in itself should tell us that we need to have these conversations with kids.
When we lose a pet, we teach our children to say goodbye, sometimes we even prepare a funeral service of some kind, to honor them. This offers our children the chance to say goodbye, but also to understand and prepare for loss and death. This will never remove the sadness from the loss, but it will prepare them and help them to learn to work through it in a healthy way, helping to remove some of the fear and unknown.
I have a wonderful relationship with my granddaughters, and if I was sick, and if I was dying, I know they would want to be there for me, and at my bedside. Most importantly, I think they would want the chance to say goodbye. Their love for me is real and deep and this would be a difficult loss for them, so I would want to honor that. And them.
If we are not given a chance to say goodbye to someone we love, it adds to the ache we feel and deepens the grief in a way that can many times not be relieved. If children can feel love, they can feel grief, and I believe that it is our responsibility to find a way to prepare them. It has to be done carefully though, because we don’t want to hit them hard with the realities of death too early on, because that might teach them to hold back from loving fully, anticipating the loss before they even get to experience the love.
Because I am a hospice nurse, and my granddaughters know that I am there for people who are dying, I talk about death and that fact that we will all one day die. I have honest conversations with them about our pets and people we love not living forever, reminding them that moments matter and that we need to appreciate the time we have with them because we never know how long we are gifted them.
I think it is important to let the kids know when someone they love is not doing well, especially if they might die. We should offer them the chance to visit with them, call them, send them drawings or cards, and to say goodbye. At the very least let them know, so that they can make the decision of whether they want to see them. Give them a choice. I have met too many people who have told me that no one let them know someone they loved was dying, until after they died. Many were not even allowed to go to the funeral, because they were “too young,” and they have carried this with them all their lives. Someone else made a really important cdecision for them and that doesn’t feel fair.
My granddaughters are four and six and I think they are both capable of hearing difficult truths. I would never assume that this information could be passed on to all four-year-old’s though, so please be mindful of each child individually and what you think they can handle.
If we tell our children that someone (or something) they love is sick, and could possibly die, and give them the choice to see them or say goodbye, we are honoring them in a kind and compassionate way and could quite possibly change (for the better) the way they navigate death and dying as they grow up.
Do I think we should tell children when someone is dying? Yes. Children feel love from the moment they are born, and this feeling grows and evolves with them over time, allowing them to build relationships and connections on a level that is beautiful. I believe they should have the chance to visit with and say goodbye to someone (or something) they love.
Lessons I learned about life through death
The first death I witnessed was when I was seven or eight years old, and I blocked it out of my memory until I started working as a hospice nurse and wrote my second book, “The Hospice Heart,” where I share childhood stories that lighten the path that brought me to do this work. I have seen a lot of death, I have witnessed more “goodbyes” than I can even count, and I have comforted hundreds of people who were about to start their grief walk. I have learned so many lessons about life, through death.
Doing this work has me constantly questioning my own mortality. It makes me more aware of the boxes I want checked off before I go. It has opened my eyes so wide sometimes it burns, to how truly fragile life is, and how so many of us take it all for granted. I have used the phrase, “if I only knew then, what I know now,” a billion times. As a hospice nurse, an end-of-life doula, and a conscious dying educator I am waist-high in the river of death and dying and yet, the more I swim here, the less I feel fear, and that comforts me.
I have so many take-aways from this work, so many lessons that I think have helped me to become the kind of person I’ve always wanted to be, which is someone the people I love would be proud of. Maybe that is my biggest lesson, to live a life where I am my authentic self, and that I leave a legacy behind that my children, their children and even their children will be proud to share.
When someone dies, many of us sit at the bedside realizing that we wasted a lot of time. That last breath takes away future conversations, experiences, and memory making so what I am reminded of, is how important it is to do that now while we can.
I have learned that we can’t go backwards, we can’t call a do-over, we can’t take back hurtful or unsaid words, or change situations where we could have done things differently. BUT!!! Death reminds me, that we can do things differently moving forward. It reminds me how truly blessed I am to be alive, to have family and friendships, to do work I am honored to do, to stare at the sky with child-like excitement, to dance like a teenager when my favorite song comes on, and to appreciate every single thing that I have in my life right now, and no longer waste a moment of it or take anything for granted.
From this moment forward, make a difference in this world; for yourself, and for the people who are still standing around you. They matter. YOU matter. Life matters. Let’s be kinder to one another, more aware of the struggle’s others might be having and extend a hand, or a hug. Let’s be the kind of people, that people who love us would be proud of. Nothing is guaranteed, all we can be certain of is right this moment… make it magically delicious!