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What Patients and Caregivers Need to Know About Death and Dying

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caregivers-end-of-life care-hospice-caregiving-comfort care

Don’t be afraid of death and dying. That’s the message from end-of-life expert Barbara Karnes.

Barbara Karnes

Author and End-of-Life Expert

Karnes, a hospice pioneer, has spent most of her career helping dying patients and their caregivers. She wrote “Gone From My Sight,” known as “the little blue book” about the dying experience that changed the hospice industry. Her new guidebook is “By Your Side: A Guide for Caring for the Dying at Home.”

Below she shares her insights into end-of-life care and offers guidance on understanding and accepting the natural process of death.


You wrote this new book because people don’t have the instruction that they really need during caregiving. What are your tips for caregivers?

Being a caregiver is a humongous, horrific, hard job — and you’re doing it out of love and compassion. You need help, support, and community help. You need family help, and you need instructions. A caregiver’s shoulders really will benefit from guidance on how to provide care in the home, on how to provide nutrition in the home, how to track medications, and how to write everything down.

Tell me about the hospice model versus the medical model.

Our medical model is that we take care of diseases and address diseases. When you can’t fix the disease, and death comes, it’s considered a failure. Hospice started outside of that medical model.

Everybody dies, and that that’s a normal part of living. Hospice addresses that just because you can’t heal the physical body doesn’t mean there isn’t healing to be done. You can heal the emotional, the mental, and the spiritual parts of a person, and gradually the hospice concept has been absorbed into the medical model.

What are the misconceptions about end-of-life?

We don’t have role models on what it’s like to die. It used to be that grandma died at home in the upstairs bedroom, and family was there. We were with her, we watched her die, and we knew that death comes. At some point, grandma went from dying at home to going to the hospital, and she died in the hospital or a nursing facility. Family was lucky if they were there, but they probably weren’t. They didn’t see the progression of grandma approaching death, and they didn’t see how death occurred. We didn’t learn how to die, so we don’t understand. End-of-life care is 90% education to teach that dying is not painful; disease causes pain.

Tell me about the labor of birth to the labor of death.

We go through labor to get into this world, and we go through labor to leave it. The doula to get us into this world supports the woman in labor and the family. The doulas to leave this world support the patient, but also the caregiver and the family.

If you educate people, particularly caregivers, on the signs of a gradual death, then they can put aside their lack of role models. If they understand that this what labor looks like, then they can neutralize the fear.


What are the signs of gradual death?

Two to four months before death from disease, three things start happening, and all three of these things are on a continuum.

1. A person is going to change their eating habits. They stop eating meat, and then pretty soon it’s fruits and vegetables, then soft foods and ice cream.

2. Sleep on this continuum. They start with a more afternoon naps. Then, pretty soon, they’re taking a morning and an afternoon nap, and they’re asleep all evening. Then, one day they don’t get out of bed.

3. They start withdrawing from the world around them.

There are additional changes that you should look for in the weeks before death. It’s like a little chicken working to get out of its shell. We’re working to get out of our body, and it takes work. The person is sleeping with their eyes partially open. They start and stop breathing. There are random hand movements, a restlessness, picking at the air or their clothes. Their blood pressure drops; they’re basically nonresponsive. Their hands, feet, and knees are purple or dark blue. Their breathing gets slower and slower until it stops.

These rules don’t necessarily apply to people with dementia, correct?

Dementia doesn’t play by the end-of-life rules. A person can be withdrawn for years; a person can sleep all the time for years. It isn’t until they’re not taking in enough calories for maintenance that the signs of approaching death kick in. You can determine, roughly, when death is going to be if your loved one does not have a feeding tube. Then, the person will be choking on food or holding food in their mouth. They forget how to swallow. At that point, that is when all of the signs of approaching death begin.

For a caregiver taking care of someone with dementia, that could go on for years and years. That caregiver needs so much support and needs family, neighbors, church, and community support to keep their sanity and to really have a life.


Tell me about comfort care.

Comfort care means we’re not going to do any aggressive treatments. We’ve recognized that we want to keep a person comfortable for as long as they’re alive. That means that we’re going to work with the caregiver and support the caregiver. We’re going to give guidance and education on how best to take care and provide comfort care.

Hospice physically deals with symptom management and pain management. They’re going to look at all the medications, they’re going to talk with the physician, and they’re going to evaluate medications. They’re going to provide bathing in the home with a home health aide, which is really important. Emotionally, they will provide social work, meetings, and visits to help the family and the caregiver process all the fears and everything that we carry. Then, they have volunteers that will come in and allow the caregiver to leave so that the caregiver can go to the grocery store and not have to leave their special person alone.

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