End-of-Life Signs
Most of the time, family and close friends want to ensure that they are beside their loved one at the moment of death. One of the hospice nurse's most pressing goals is to vigilantly monitor the hospice patient for signs of imminent death so that family and friends can be present at their last breath. I want to provide you with a list of the signs that we — hospice nurses — look for.
Although different for everyone, this is what death looks like for most patients.
The two stages of decline before death are called transitioning and actively dying. The line is not always clear as to when transitioning ends and the active dying process begins, but there is often a shift that is visible and feels intentional. The patient seems to acquiesce at the actively dying stage, to let go, and let the body do what it needs to do.
Transitioning
Transitioning is the first stage of dying. It describes a patient’s decline as they get closer to actively dying. Generally, when one is transitioning, they likely have days — or even weeks — to live. I have seen some patients completely skip the transitioning phase and some stay in it for weeks.
When a patient is transitioning, they are typically bedbound due to exhaustion, weakness, and fatigue.
They are less responsive and sleeping most of the time. They may sluggishly rouse when you tap them on the shoulder. They may have a more difficult time waking up.
They rarely notice if they go to the bathroom in their brief, though they may become agitated or restless if this happens.
They turn inward and care less about external events. They pay less attention to the TV or music. They may not be aware of the people entering or leaving in their room.
They may be able to verbally respond, but they probably do not want to engage in conversation.
They will start eating and drinking less, perhaps only small bites of yogurt or ice cream that you have to offer them throughout the day. They likely will not have the strength to feed themselves. Maybe they will take ice chips that you gently place in their mouth or drink sips of water through a straw — if they still have the strength to use a straw.
Patients may use traveling metaphors when they speak, referencing packing for a trip, waiting in lines, or boarding a ship. They are preparing for their next journey.
Patients may use traveling metaphors when they speak, referencing packing for a trip, waiting in lines, or boarding a ship. They are preparing for their next journey. If they are distressed, listen for any underlying messages, ask them if you can help, or offer reassurance.
Patients may talk about friends or family members who have died, or they may see people who have died. Patients generally find this experience quite comforting. I was sitting near a patient’s bedside who was transitioning and after a while, I told her I needed to see another patient. She faintly replied, “It's OK, my husband is still here. In fact, he’s sitting in the chair with you.” I apologized to all parties and carefully rose from the chair I was sharing with her husband who died a decade ago.
Patients may experience agitation and restlessness in bed. They may also try to unsafely get out of bed and back in bed. Call the hospice team for guidance in this case, as this can be particularly distressing for both the patient and the family.
Patients may experience uncomfortable symptoms like pain, shortness of breath, or anxiety. Most patients will be given a comfort kit that includes medications to alleviate common end-of-life symptoms, and the hospice nurse can provide guidance over the phone if there is discomfort that you do not know how to deal with. Roxanol/morphine is commonly used for pain and shortness of breath and I wrote a specific blog about how to administer this medication. Lorazepam/Ativan is commonly used for anxiety and insomnia. Please call the hospice team anytime you start a medication from the comfort kit or have any questions or concerns.
Actively dying
Actively dying is the final stage where the patient's body is doing the work of dying. The patient will display signs that start out quite subtle but will progress and intensify over time; the progression of the following changes in the patient will signal to you that the patient has somewhere between hours and days to live.
I like to assess my patients hourly or so to follow the rate that the patient’s body is progressing in the active dying process. Paying attention to the following signs and the rate in which they increase will help give you an idea of how soon someone might die.
The dying patient is no longer verbally responding or actively engaging with the world around them.
They start to react rather than respond to touch or sound.
The patient is sleeping all the time and will not rouse if you try to wake them.
The patient’s agitation and restlessness may increase. The patient reaches their hands up into the air to “pick” at nothing.
They may experience uncomfortable symptoms like pain, shortness of breath, or anxiety. Again, most patients will be given a comfort kit that includes medications to alleviate these common end-of-life symptoms, and the nurse can provide guidance over the phone about how to administer them.
Their blood pressure and oxygen saturation drops. I prefer to not take their blood pressure because, for most, this is uncomfortable, but it is easy to check their oxygen level with an oximeter. It may be helpful to have a baseline as some patients living with lung disease can tolerate low oxygen levels for months and months.
Their body temperature may quickly fluctuate between hot and sweaty to cool.
Their knees, legs, and feet get cool to the touch and colder over time. I always check the temperature of the knee first and often. Their hands and fingers will get colder over time. And their arms will also become cool to the touch.
Their knees start to develop very slight bluish/reddish blotches called mottling. The mottling will get darker and more pronounced as they are closer to dying. This can spread to their legs, heels, feet, and the areas of their body that are in contact with the bed.
Their nail beds appear dusky.
Their wrist (radial) pulses feel thready or may be difficult to find altogether.
Their urine output decreases. They may have as little as 50 milliliters of urine in their catheter bag.
Their face appears quite pale or ashen as time goes on. Their nose, lips, and the area around their mouth get very pale.
“Where there is sorrow, there is holy ground.”
Oscar Wilde
Respiratory Changes
In addition to these visual signs, observing changes in the breath can signal the rate at which the patient is dying.
It is likely that as the patient gets closer to death, their breathing pattern will start to vary. They may develop a slight wheezy noise in the back of their throat which may become more pronounced over time. This is known as the “death rattle.” Listen closely for this as it suggests that the patient has between hours to a single day left to live.
The “death rattle” should not bother the patient, as it is just fluid moving over the vocal cords. Sometimes, however, it can sound very wet and congested and may cause the patient or the family distress. Medications and repositioning the hospice patient can help minimize any discomfort caused by this.
The patient may also start to experience periods of apnea (not breathing) for 15 seconds or more. This can last up to a solid minute.
Their rate and depth of breathing may alternate from slow, deep breaths to rapid and shallow, like a wave (what’s known as Cheyne-Stokes breathing).
Minutes from dying
When they are minutes from dying, their respirations will look very different. Their breath may become very shallow and just the lower part of the jaw moves, known as mandibular breathing. Or, they may have significant pauses between breaths — up to a minute (apnea). They may appear as though they are opening and closing their mouth without actually breathing. They may have a gasping quality to their breath, known as agonal breathing. Or, their lips will “puff” out with barely a breath, which is called fish out of water breathing.
Ultimately, they will breathe their last breath, which may be followed by another one or two in the coming minutes.
Their heart will stop.
Consider a silent pause in the room — a moment to honor this beautiful human and this sacred life event.
Consider a silent pause in the room when your loved one dies.
It is a gift to care for someone who is dying. A gift that may tear you up, soften you, break you, and remold you into a stronger and more tender human. When you know what to expect, you do not have to react, but you can instead respond from a place of wisdom and love. This information will not make their death easier emotionally, but it will give you the ability to know when to gather family and alert friends for love-filled send-offs. For more information about caring for someone at the end of life, here is my blog on How to Care for the Dying.
Blessings.
Buy my book for guidance on how to care for a loved one who is dying.