How Caregivers Can Prepare for a Loved One’s Final Days

When someone you love is dying, knowing what to expect can help you feel more prepared — and give you practical ways to offer comfort and support.

The dying process is unpredictable. No one can precisely say whether a person has hours, days or longer, even when hospice care is involved. “Death doesn’t happen according to an algorithm,” says Dr. David Casarett, a professor of medicine at the Duke University School of Medicine. “There are certainly signs, but I encourage families to use them as guideposts, not as a way to predict exactly when death will occur.”

There can also be brief bursts of energy or alertness — called a “rally”. Casarett defines a rally as “a period of lucidity, increased activity or energy within 24 hours of death.” Someone who has been largely unresponsive, for example, may suddenly become awake, engaged or unusually energetic for minutes or hours.

For families, he says, the important thing is not to interpret a rally as a sign of recovery. “A rally may be a striking period of energy, but it isn’t a reliable sign that someone is getting better,” explains Casarett, author of Undiscovered Country: A Doctor’s Travel Guide to the End of Life.

Practical ways to prepare for the end of life

As someone approaches the end of life, caregiving can shift from trying to fix problems and extend life to providing comfort, dignity and companionship. That transition can be difficult. Sometimes the most important thing a caregiver can do is simply be there and know when to step in, when to step back and when to ask for help.

Here are six things caregivers can do to prepare for the final stage and make the experience as comfortable and meaningful as possible for them and their loved one.

1. Shift caregiver mindset

As death approaches, the caregiver’s job changes. For months or years, the work may have involved scheduling appointments, preparing meals, managing medications, bathing and solving problems. Near the end, that “doing” can give way to “being,” says end-of-life doula Kila Ealy-Acey, who lives outside of Atlanta. “Your presence, your voice, your touch and your love are all still forms of care,” she says. That can mean holding a hand, playing familiar music, reading aloud, praying if that’s meaningful or simply sitting quietly.

2. Lean on the hospice team

The hospice care team can help families understand what is happening, anticipate changes and make decisions focused on comfort. Nurses can explain symptoms and medications; aides can help with physical care; social workers can help families navigate emotional and practical issues; and chaplains can provide spiritual or emotional support, whether or not a family is religious, explains Paul.

In a hospital, families can also ask about palliative care. Caregivers often don’t know what questions to ask until something frightening happens. Ideally, those conversations should happen earlier. Ask the medical or hospice team what changes to expect, what to do if the person becomes agitated or has trouble breathing, and whom to call overnight.

3. Manage medications safely

Medication can be one of the greatest sources of anxiety for families. Caregivers may worry that morphine or other medications will cause excessive sedation or hasten death. The goal of hospice medication, however, is symptom relief. At the same time, caregivers should never independently increase, decrease or discontinue medications without guidance from the medical or hospice team. Determine which medications are still providing meaningful benefit, which are specifically for comfort and what should be given for pain, breathlessness, anxiety or agitation. Also, ask what happens when swallowing becomes difficult and whether medications need to be changed to another form.

Before a crisis occurs, caregivers should have a clear plan: What do I give if there is pain? What symptoms should prompt a call? Having those answers in advance can prevent panic when the situation changes quickly.

4. Give loved ones permission to let go

Caregivers can become so focused on keeping their loved one comfortable and safe that they unintentionally create pressure to keep fighting. Sometimes, the most loving thing is to create a peaceful environment and allow the person to be where they are. Ask what they want: Do they want family around, or would they prefer quiet? Do they want music, conversation or darkness? If they can still communicate, let their preferences guide the room. If they can’t communicate, then make decisions for them based on their personality.

A person who has always been private may not want a crowd gathered around the bed. The goal isn’t to stage the perfect death; it’s to understand the person well enough to honor what feels right for them.

5. Don’t be afraid to step away

Many caregivers feel guilty about leaving the bedside, waiting for the moment of death. Being present every second isn’t a measure of love or devotion. Ealy-Acey encourages caregivers to eat, sleep, shower, take a walk and let someone else sit with their loved one. Taking a break doesn’t mean stepping away from your loved one — it means giving yourself permission to care for yourself, she says.

Sometimes a person dies after family members briefly step out of the room. Some private people may even prefer to die in private, says Paul. “I’ve seen it many times that someone will pass away when they are alone.” The important point for caregivers to recognize: They don’t have to be at the bedside every second to be there for a loved one.

6. Consider an end-of-life doula

Doulas don’t replace hospice nurses, physicians or other medical professionals. Their role is generally nonmedical: helping families understand what may happen, creating a calm environment, facilitating conversations, supporting rituals and providing companionship. For some families, having someone who can focus entirely on the emotional and human side of the experience can be enormously valuable. As Ungerleider put it, “I wished we had brought in someone earlier who could have provided nonmedical support for my father and for us.”