24 - 48 Hours before Death
Most hospice patients go through two stages of dying: the Transitioning Stage and the Actively Dying stage. When you are the primary caregiver for a hospice patient, most want to know when death is imminent so they can be present for their loved one.
Transitioning: Days to a Week before Death
Transitioning is the first stage of 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. For most, they die within the week.
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.
The patient may reach their hands up into the air to “pick” at nothing. This is cleverly called “picking.”
They rarely notice if they go to the bathroom in their brief, though they may become agitated or restless if this happens. If you are the caregiver, check their brief when they are restless or every four hours or so.
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 their room.
They may be able to verbally respond, but they probably do not want to engage in conversation.
Eating and drinking is almost nonexistent, and they are too fatigued to feed themselves. They may take small spoonfuls of yogurt or applesauce and sips of water through a straw. If they do not have the strength to use a straw, place a small amount of water in an oral syringe and administer little bits on their tongue. Oral care (swabbing the mouth frequently with moisturizer and mouthwash) is important and refreshing for the patient at this time.
Patients may experience agitation and restlessness in bed; they may constantly move around in the bed, attempt to get out of bed, be confused or agitated, combative or distressed, hallucinating or hollering out. Call the hospice team for guidance, as this can be particularly distressing for both the patient and the family. And if the patient musters the strength, they can potentially land on the floor in an effort to crawl out of bed.
Haldol or Ativan are medications we use frequently for this end-of-life symptom typically known as terminal agitation. The hospice nurse can pay an urgent visit and will offer tips on how to get medications when a patient has a difficult time swallowing. (Crush the Ativan and stir with a tiny amount of water [0.3 mls] in an oral syringe). These medications may be slightly sedating, and if the patient is at the end of their life, they may not rouse after the medications are initiated. If the patient is distressed and awake, I will have a conversation with the family to encourage medications to allow the patient to sleep and be comfortable.
If the hospice patient was experiencing symptoms prior to the actively dying state, we anticipate they will still need their medication for anxiety, shortness of breath, or pain. Most hospice patients will be given a comfort kit that includes medications to alleviate these 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: 24 - 48 Hours before Death
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 to 48 hours to live. For most, they die within 24 hours.
I like to assess my patients hourly 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.
Responsiveness
The hospice patient is not verbally responding. They are in a coma-like state. We always say they can hear you still, so be mindful when you are in the room talking to them. It is still a great time for family members to call in and whisper their final good-byes and I-love-yous. Caveat: Some patients are still verbally responsive until minutes before they die, and some have squeezed my hand when asked a question as they were dying.
Breath/Respiratory Changes
Their breathing pattern will vary significantly in the actively dying state, and I think this is one of the cardinal signs of the actively dying state. The patient is generally non-responsive and their breathing is very different from you at the bedside. It will become rapid and shallow. Normal respiratory rate is 16 breaths a minute, rapid is over 30 (tachypnea). Then the respiratory rate may change to slow or deep.
The patient may experience periods of apnea (not breathing) for 15 seconds or more. They may not breathe for a solid minute and then will take a breath.
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).
I intervene when the patient appears to be in any kind of distress. I will attempt to reposition their body, elevate the head of the bed, and turn on a fan. If they are still showing signs of discomfort: their brow is furrowed, they are moaning, or their breath is deep and labored, I will administer morphine or another opioid to reduce their effort. Oxygen can help in a pinch but at this stage I like to use opioids. My blogpost here talks about the pros and cons of oxygen at the end of life. As always, call your hospice team for guidance.
The Death Rattle
Because most patients are in a coma-like state, they are unable to actively swallow, and secretions may build up in the back of the throat. These respiratory secretions are also terrifyingly known as the death rattle and it begins for many patients about 24 hours before death. This symptom does not happen to everyone. When it does, you can hear it in the very back of their throat initially–it will sound a little wheezy. This will progress over time. We generally say it does not bother the patient, but I have seen it bother the patient. It always bothers the family.
When it seems like these respiratory secretions are distressing to the patient, they will try to clear their throat or they will cough and their brow will be furrowed. If you think they look uncomfortable (moaning, groaning, furrowed brow), they probably are.
It is rare that deep suctioning will help, but it can. This is not usually available in the home, so positioning and medications are the best interventions. Bring the head of the bed up, and gently reposition their body and their neck. Try a few different variations and wait a minute or two.
If the secretions are wet and copious, you can also try the high side lying position also known as the Connecticut Drain because my nurse friend Linda from Connecticut taught it to me. This position feels counterintuitive and requires some caregiver chutzpah. You want the bed totally flat, bring the patient closer to one side of the bed and then place them on their side. Construct a wall behind them with pillows to keep them on their side. Place a towel underneath their cheek to catch any secretions that may come out of their mouth. Wait a few minutes to see if this helps. If it doesn’t, return them to their back and elevate the head of the bed.
Subcutaneous glycopyrrolate is my drug of choice for respiratory secretions. In the home, atropine is used. These medications can be very drying to the patient, so it's best to do this when the patient is minimally responsive. Oral care (swabbing the mouth and placing small amounts of water on the tongue are appreciated by the patient).
Agitation and Restlessness
The patient’s agitation and restlessness may increase. Call the hospice team if you witness agitation or restlessness because it can intensify quickly and is quite distressing for everyone. We have medications such as Haldol and Ativan that can significantly soften this process. Look at potential underlying symptoms of agitation: check their linens for wrinkles, their brief for urine or stool. Have they urinated lately?Urinary retention can cause restlessness. Could they be in pain? Anxious? If they were in pain prior to this state, they will still require pain medication as they are dying.
Oftentimes families are afraid to administer the hospice medications because they dont want their loved one to be too sleepy. I always advocate for sleeping and comfortable versus awake and distressed. I have witnessed too many miserable, suffering deaths and am fierce about advocating for a peaceful death.
Vital Signs
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. Generally, if the oxygen level is 79% or lower, they will likely die in the next 24 hours. Caveat: I had a patient with an oxygen saturation of 96% and she died one hour later, and another patient lived for months with oxygen levels in the 70s.
Most hospice nurses do not like to take vitals because it is a weird thing to be so focused on numbers and can take you away from paying attention to the patient. I secretly carry around an oximeter and check my patients all the time.
Temperature Fluctuations
Their body temperature may quickly fluctuate between hot and sweaty to cool. I never take temperatures either, I old-school feel the patient’s forehead or arms and go from there. I personally hate to administer tylenol suppositories for an elevated temperature (unless the patient is severely hot). I remove the blankets, add a fan near the bedside, and cool the patient down with wet washcloths. Fluctuations are normal and expected. As soon as they feel hot, they may also feel cool, so you may need to replace the blankets soon.
Their knees, legs, and feet get cool to the touch and colder over time. I always check the temperature of the knees first and often.
Their hands and fingers will get colder over time. And their arms will also become cool to the touch.
Mottling/Circulatory Compromise
Their knees start to develop very slight bluish/reddish blotches called mottling as the circulation to extremities diminishes. 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 face appears quite pale or ashen as time goes on.
Their nose, lips, and the area around their mouth get very pale.
Urine Output
Their urine output decreases. They may have as little as 50 milliliters of urine in their catheter bag. If the patient does not have a catheter, you will want to make sure they are not retaining urine. Cardinal signs of urinary retention are no urination in 12 hours, agitation, restlessness, and distended bladder; feel just above their pubic bone and their bladder will feel distended and firm. If you have any questions or concerns, call the hospice team.
Minutes from dying
When they are minutes before death, their respirations and their overall appearance will look very different, and this state can be difficult for the family to watch, but it is simply how the body dies. I recommend pulling up a chair and sitting at the bedside as this final process can take one minute or up to twenty minutes. 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). You may think that was their last breath, but the patient may surprise you and take a few more breaths with these significant pauses. 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.
Their heart will stop.
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 and The Moment of Death.
Blessings.
PS: I have been a nurse for 27 years and a hospice nurse for 18 years; the problem with doing this forever is that you see such varying degrees of dying. As soon as I tell a family member that their loved one has days to live, the patient could have a terminal event and die two hours later. Or when I think a hospice patient will die within the hour, all family members rush into the hospice home to sit at the bedside of their dying father and the next day, dad is eating tacos. The longer I do this work, the more variables I witness and the more humbled I am by my predictions.
