Care for the Dying
How to Create Space for the Dying Process
Taking care of someone you love is physically exhausting and emotionally draining. You will surprise yourself though. Day after day, hour after hour — you are strong enough for the intensely beautiful work of caring for someone who is terminally ill.
The active dying phase may last anywhere from hours to days. As the patient gets closer to dying, they may be bedbound and less aware or engaged with the events around them. They are typically sleeping most of the time and unable to verbally respond while their body is doing the work of dying. Cultivating a space of love, presence, and support as they go through this phase can bring an enormous amount of peace. Here are things you can do to support yourself and your loved one during this process.
Ask for help.
It is particularly challenging to take care of someone who is dying all by yourself. Call on your kids, your neighbors, and friends. Most people want to help, yet they have no idea how much work is required.
You will need help with the physical care at the end-of-life — sitting next to the dying patient, helping with turns, bathing them, cleaning their face and moistening their mouth, changing their briefs, changing their linens, and administering medications. Trying to take this on all by yourself will only lead to weariness.
It is also necessary to seek out emotional support for yourself — someone to bear witness to your suffering, your grief, and your tending. My siblings and I often recount the details of taking care of my mom when she died 20 years ago. This connection made during that time continues to help us integrate the loss into our lives.
And who doesn't need help with tending to a home? The bills, the garden, the cleaning, the fridge, the laundry, the toilets, the kitchen counter are a lot to take on even when you are not caring for a loved one; I will always say yes to someone who wants to clean my fridge.
The bottom line is that when you ask your friends and family to help in whatever way they can, you are giving a gift to both them and yourself.
Establish a morning routine with your loved one.
Sometimes it takes days to die. If appropriate, each morning, open the curtains and let in some fresh air. Clean and swab your loved one’s mouth, wash their face and hands, deodorize their armpits, or bathe them. Check their briefs. Change their shirt or pajama top, put them in something soft and stretchy that they enjoy. An easy way to get a shirt on them is to cut the back of the shirt from the bottom to three-quarters of the way up. If they have hair, brush it every day or you will have a matted mess on your hands.
Enter the room slowly and softly.
Your loved one will be slipping into the next mystery, and there is a lot of peace there. Gently bring your loved one’s awareness to what is physically happening around them. I am a cheery morning person, and at 7 a.m., my freshly lipsticked-smile and exuberant greetings were simply too much for my patients (they told me so). I learned to gently and quietly wake them and only if necessary.
Gather some chairs and tissues.
Presence is profound at this time. Encourage people to sit by the bed rather than stand. This gives the patient a better sense of connection rather than hovering over the bedside. It may be helpful if you have some quiet activity you can do beside them such as praying, reading, or knitting. If the patient is still able to engage, shift the chairs so the focus is not directly on the patient. It is eery to wake and find 4 people staring at you.
Have tissues available. There will most likely be some tears. I do not recommend the recycled tissues at this moment — you want the soft, fluffy, state-of-the-art tissues.
Assume your loved one can still hear and understand you.
Assume they can hear you even if they appear unconscious. Friends and family can speak kindly and directly to the patient to discuss what is happening around them. You can say things like, “Mom, it’s us, Kathleen and Ann, we are going to gently move you now.” Or, “Derek is on the phone from Arizona. I am going to hold the phone to your ear so they can say hello.”
You can also take the conversation deeper, even if they cannot respond. Consider, or even speak out loud, these phrases: “Please forgive me,” “I forgive you,” “thank you,” and “I love you.” Ira Byock, a palliative care physician, reports that these are the phrases that can clear the path for the patient and the caregiver to say their goodbyes.
Silence is perfect too.
Silent presence is supportive and brings honor to this sacred process.
Manage their pain and any breathing difficulties.
During the time of active dying, it is your job to keep them physically comfortable. Caregivers, look for the typical nonverbal signs of pain such as grimacing, a furrowed brow, gripping, tension in the body, moaning, labored breathing, a clenched jaw, restlessness, and agitation. If the patient appears to be in any kind of distress and the prescribed medications are not working, call your hospice team for guidance.
Continue to give critical medications.
Give critical medications such as scheduled pain meds, nausea meds, or anti-anxiety meds. Ask the hospice team if you can discontinue any non-essential medications. The patient will be unable to safely swallow, so you may need liquid medications. If giving liquids in the mouth, gently and slowly insert it into the cheek area or under the tongue.
Gently reposition your loved one.
Caregivers should gently move the patient every two to four hours or so while the caregivers are awake to prevent bedsores and increase comfort. Even a slight shift of the pillow is better than no movement at all. Move the patient to the right side with pillows supporting them, to their back, to the left side, and repeat. That said, some families may request their loved ones not to be moved at all. This makes a wound care nurse cringe, but when someone is dying, not moving them may be the better, softer choice.
Also, you can ask the hospice home health aide for instructions on safely moving your loved one in bed. These aides are magic.
Anticipate any discomfort.
If your loved one appears to be in pain with turns, premedicate before you move them. For example, if caregivers are going to move the patient at 3 p.m., they should administer prescribed pain medication at 2 p.m., or if the patient gets anxious when the grandchildren are running around the house with markers, administer anti-anxiety medications an hour before the visit.
Manage secretions.
At end-of-life, some patients may develop a slight rattle in the back of their throat; this is known as the death rattle. In theory, it is not harmful or uncomfortable, and it may or may not increase in intensity as time goes on. If the patient has accompanying secretions and it appears to cause distress, position the head of the bed upright or move the patient into a high-side lying position in which the bed is flat and the patient is lying directly on their side, supported by pillows. Certain medications may soften this symptom. Call the hospice team if you have concerns.
Keep the patient comfortable.
Do not skimp on pillows, use a lot of them.
Use a lot of pillows. If they are lying on their back, you can place pillows underneath their arms or under their knees and heels. If they are lying on their side, support their head and neck with pillows, tuck some behind their back, place one in between their knees, and place one in front of the patient's torso to support the top arm. Tuck pillows wherever they may need extra support.
Clean and moisten their mouth, and apply lip balm. Your loved one will be unable to safely swallow and their mouth will get dry. You can wet the patient’s mouth with an oral syringe or a mouth swab.
Check their briefs every few hours to make sure they are clean and dry. Sometimes if a patient is nonresponsive and agitated, a wet brief could be the issue. It is helpful to have some absorbent pads underneath the patient if urine leaks out of the brief; this will prevent you from needing to do a full linen change every time.
Change the linens if they get soiled or wet from sweat. Ideally, the hospice home health aide can teach you how to safely do this as it is a rather involved process.
Wipe their forehead with a moist washcloth if they are hot.
Consider any unfinished business.
Often, patients need to complete tasks before they can die peacefully. Are there any loose ends that need tidying? Do they need reassurance that you will complete a task for them? Are they concerned about their finances? Ask them specifically what they need.
Are there any relationships that may need closure? Sometimes patients wait to die until a distant loved one arrives. Or, they may need to talk to a certain someone before they die. Often, patients cannot engage in a conversation at this stage, but you can call up any family or friends and hold the phone to the patient's ear.
Manage regrets. What does the patient need to die in peace? What do you need to live on in peace? Where are declarations of love, forgiveness, or gratitude necessary? My own dad died suddenly, and I still regret that I never told him “thank you” or “I love you” before he died.
Give your permission to go. Some people feel it is very important to tell their loved one that they will be ok without them and basically grant them permission to go and step into the next mystery. However, I also know families who refused to make this declaration. They felt it would insult the patient. Give them your permission to go if you feel it would be helpful and if you can live with this. One compromised alternative might look like, “I love you, and I do not want you to go. I will miss you every day if you go, but I know that we all die someday. This might be your time.”
Consider the patient's spiritual needs.
Would the patient want a priest, chaplain, rabbi, or religious leader to come to their bedside and offer a final blessing? Have they told you about any religious rites they want? Do they have any holy books that they would appreciate you reading to them?
Your hospice team has a chaplain who may be on call 24/7 and can offer a sacred bedside ritual, or they can find a spiritual leader in your community to perform the patient’s desired ritual.
I once asked a gentleman who could barely talk if he wanted me to call his family, and he shook his head no. Then, I asked him if he wanted me to call his church, and he shook his head yes. I looked through the chart, located his church and called. I came back a few hours later and the patient was actively dying with a large cross on his chest. The priest of the church had performed a bedside ritual, and now this man was ready to die.
Consider and respect the patient's preferences. Consider their religion, their values, their culture, and their philosophies. What would bring them peace at this time?
I have seen family members visit and although the patient was Christian, they began Buddhist chanting at the bedside. I have also seen family members quietly pin a saint onto the patient’s shirt in spite of the patient’s non-existent religious beliefs.
I get both sides of it; if I was dying and my sister doused me in oils and spoke in tongues, I would feel like she hi-jacked my death. However, I do know that we all deal with death differently and this would be her way to live in peace after my death. Family dynamics and personalities persist even when someone is dying.
In general, this is the patient’s final chapter and should be all about them while the active dying process is taking place.
Create a soothing environment.
Turn on the TV. It may not be soothing for you, but it can be surprisingly soothing to your loved one if their typical TV news channels are on.
Play music or sing. One of my patient's family members asked for any kind of Elvis music. We found an old CD, and the patient died to Elvis singing “Blue Christmas.”
Read to the patient from their favorite poet, fiction novel, holy book of choice, or anything else that may bring them comfort.
Provide ongoing reassurance. Remind your loved one that they are safe, they are home in their bed, and you are with them.
Hold their hand or gently place your hand on their arm. The physical connection can be reassuring for patients; you will know if they do not like the touch, be attentive to their reaction.
Consider making their room a laptop-free zone, if appropriate. Remote working and updating social media, while potentially necessary, may take vital time away from being present to your loved one as they are dying. The patient can hear everything, and they will hear you thumping on your computer. If you need to work, take breaks to simply be at the bedside. Consider quiet, old school activities such as cards, knitting, and reading to pass the time.
Laughing and happiness are sacred too. Expressing happiness alongside your loved one does not betray them and may bring relief to the room.
Go to the bathroom if you need to.
If you are concerned about leaving the bedside because you may possibly miss the moment of death, but you desperately have to pee, let the patient know when you will return. This gives the patient permission to either wait until you return or exit this world when they are ready, which may be when you are not in the room.
Consider holding vigil for your loved one. Have family and friends take turns sitting with the patient 24/7 as they are dying.
Take some deep breaths.
Many people are afraid of being with someone as they die simply because they never have before. Inhale slowly. Count to four, release any tension as you exhale slowly, then count to four again. Repeat. Notice the tension in your body. Feel exactly where it rests in the body and continue to breathe. You might need a minute or so. It’s a compassionate presence exercise — a practice to show up even when you are uncomfortable. By giving this discomfort some deserved attention and acknowledgment, you allow it to soften and release a bit.
If you ever have questions, you can always call the hospice team, but if you care for your loved one with compassion and presence, that is perfect.
Blessings.