This guide explains how the body can change in the final hours and days of life, how to offer comfort, and what to expect after death. It is popular wisdom within death care circles that the body knows how to die. And yet few of us have direct experience caring for the body as it is dying. So when things feel especially scary or hard, it can be helpful to remember that even though the person who is dying is singular, the symptoms of dying are not. There is no perfect way through, only the tending to each moment as it arises to the best of our understanding and ability.
Physical changes in the final hours and days
In the final hours or days of life, common changes can include diminished appetite and thirst, increased confusion, labored or chaotic breathing that can include noisy secretions or sudden, long pauses, lack of clearly articulated communication, mottling of the skin, decreased urine output, shifts in body temperature, cooling of the body’s limbs and extremities, appearance of metaphorical or symbolic language, restlessness, and lethargy.
Depending on how hands-on your care is, by desire or necessity, many caregivers will feel suddenly overwhelmed by the intensifying needs that happen towards the end of life. Even the most experienced caregivers may find the need to expand their support systems in new ways. Hospice care is a vital and recommended addition even though it is not designed to provide 24/7 direct care. Hospice provides a model of interdisciplinary support that works to address the care of the whole person and their family at the end-of-life. Hospice care is not only for the last days of life, but some of the deepest benefits happen when patients and families access this support in the weeks and months before death happens. (See our resources on what to expect from hospice.)
As death has moved out of homes and into health care settings, understanding how a body dies has become foreign. When we find ourselves in the position to provide such intimate care, most want to feel confident in their ability to meet their person's needs. This can feel profoundly true when we remember that caring for the body through all its changes acknowledges and honors the innate dignity in each person. Caring for the body through all its changes acknowledges and honors the innate dignity of each person.
Following the body’s lead
It is crucial to meet the person who is dying where they are, rather than where we want them to be. Do they want to talk directly about what is happening? Do they want to connect with others? A person who is dying may naturally appear to go “inside” themselves more with fewer visits back to the “outside.” This can be a difficult shift for caregivers who might try to coax their person to “return” to the world even when doing so might cause them stress or confusion. Knowing that there is a natural shift of the body inward can sometimes help to ease some of the painful realities of letting go. “Following the body” is about being observant and responsive to the physical signs shared by the person who is dying; it is not “giving up” on them.
Consider the following:
- How are you able to read your person’s non-verbal signs? What do you notice about changes in their appearance? Is their forehead smooth or furrowed as if in pain or worry? Are they restful? Quiet? Agitated? Engaging in repetitive gestures? Are they calling out, crying, moaning?
- Can you connect those expressions to observations on what is providing them comfort? What appears to be overstimulating or soothing as their sensory relationship to the world dissolves? Environmental cues that used to be “ordinary” or even welcomed, such as turning on a light in the room or playing favorite music in the background might unexpectedly become triggers for stressed or agitated responses.
- What conversations do you need to have with your person’s doctor about their pain medication? Are you noticing that the previous dosage is not lasting as long? Are the symptoms of discomfort coming back sooner or not being relieved at all?
- Pain is not always physical in nature even when it is expressed through the body, where we carry any unresolved and unhealed needs, traumas, and fears. What do you notice about the way pain is being expressed by your person? Is it helped by medication? Or does there appear to be a repetition of themes, words, images that are recurring regardless of medication?
Hospice team members, specifically chaplains, and death doulas are attuned to what Dame Cicely Saunders described as “total pain” and may be able to provide interventions to address emotional and spiritual forms of pain that are also commonly part of our dying process.
Following the body’s lead means we turn our focus to understanding what helps in the moment, especially when it involves letting go. In doing so, we may encounter our own grief and resistance as each adaptation can be a reminder of what has already been lost and what is ahead. Tending to one’s own grief and emotional pain is vital as caregiving moves towards adapting to the reality of death rather than rehabilitating life.
Here are a few examples of how these shifts might materialize as we follow the body in the dying process:
- Offer, don’t compel. As a caregiver, you can always make invitations and offers for a person to eat, take sips of water or to sit up in bed, but if they are closing their mouths to your offers of food or drink or sitting up is uncomfortable for them, their body is telling you something important at that moment. Perhaps tomorrow they will signal a different response, or it may be the same. Either way, you are listening and observing their body’s cues about what it needs. For example, when a person is no longer able to swallow fluids but still expresses thirst, offering a small oral swab soaked in cool water can be a tangible adjustment to bring comfort and relief.
- Nourish to comfort, not out of necessity. At the end of life, rules about what to eat or not to eat no longer apply. If a person still has an appetite, focus entirely on what brings them pleasure and comfort. However, in the late stages of dying, nourishment will shift away from the physical forms towards intangible ones, like compassionate presence, gentle touch, music or other appropriate spiritual interventions.
- Make space for silence. There will come a moment when your person will no longer be able to respond, at least not visibly or clearly. There will be a last word which sometimes comes in very unceremonious ways, a mundane word or moment that no one knew would be the last point of contact. Responding in kind with silence, or gentle reassurances, rather than trying to pull them back into the world of living conversation might bring anguish at the outset. Trust as best as you can that their body is giving cues for something that it needs right now. Withdrawal of one’s senses and engagement with the world is a normal, if not necessary, part of the dying process.
Caring for the body through all its changes acknowledges and honors the innate dignity of each person.
Unpredictable changes in the dying process
Checklists are helpful to have in preparation for any journey, but the journey of dying is the most mysterious one that any of us can take. What we are able to definitively know and prepare for in the process is small in proportion to all that is unknown.
Understanding what happens to the body in the dying process is helpful to normalize our understanding of the physical process of dying. At the same time, veteran death workers will express humility and surprise at the way death does not behave in a prescribed fashion. Death, as a force of nature, is similar to hurricanes or earthquakes inasmuch as we have no control of its wake. The best we can hope for is preparation of our shelter and provisions, as we can never fully control the intensity of the storm itself and what it may bring forth.
Changes in the dying process might include:
- Terminal lucidity. The mysterious phenomenon when a person who has otherwise “detached” their consciousness from the external world suddenly returns and begins engaging and talking in ways that can feel like they are “back.” For a brief time, they will be. People who have witnessed this often express a sense of wonder or strangeness as well as gratitude for the additional time to directly connect with a loved one.
- Terminal agitation or delirium. Like a difficult childbirth, a process characterized by hard labor, there are difficult deaths. Terminal agitation can be one of the hardest aspects of dying. Sometimes, in the active dying process, a person will enter into a period of intense agitation that can include restlessness, terrifying visions, and disturbing emotional states. Because individuals in this state are unable to offer a coherent narrative of their internal world, pharmacological interventions are commonly utilized to address the outward manifestations of terminal agitation. However, many death workers observe how terminal agitation might not always originate in medical causes but rather deeply internal, psychospiritual processes that benefit from steady, non-anxious presence and spiritual interventions that tend to the deep soul work that is happening in that space. This can include breathwork, energy work, humming and toning, validation of symbolic language and somatic experience, and prayer or meditation on the person’s behalf.
- Unexpected changes in behavior. The personalities and personas that we shared with others during our conscious, healthy lives may not have presented the unhealed, unaddressed pains and traumas that are carried. As a result, the act of dying can dismantle previous ways of knowing the person. For example, people who are dying may sometimes say and do things that they would never have said or done at any other time in their lives. Changes like these can be distressing to witness.
- When death happens while you’re away. It is not uncommon to hear stories about how a caregiver was at the bedside of their person around the clock and yet in the moment they did step away for the smallest of breaks, that is when their person took their last breath.
Caring for the body after death
Once the person has died, there is no absolute recommendation for how to be with and care for a dead body. Often, families turn to their own religious or cultural traditions for guidance about what to say and do in this moment. Each person also has their own level of tolerance and experience to be with and care for a dead body. The first thing to know, even if you are at a private residence, there is no rush to move the body. At hospitals and skilled nursing facilities, families can regularly spend hours grieving together at the deathbed, washing, anointing, or simply being present with their person.
For the final arrangements, there are a growing number of options now available. Most common is the use of the services of a mortuary or a funeral home, including the transport of the body from a private residence in the case of hospice care or the hospital. If you choose to observe, a mortuary service will guide you through what can be a disorienting and distressing experience of watching your loved one being moved and re-positioned into a plastic body bag. There is no benefit to causing further harm to yourself by exposing yourself to some of the unfiltered realities of death.
A growing number of families are feeling empowered to make their own final arrangements for a loved one, from caring for the body and designing home funerals to transporting the body for burial or cremation.
