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How Will My Family and I Know When I Am in the Final Stages of Life?

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Some symptoms are fairly common in the final 2-3 months of life. Pain often increases and requires higher doses of medication. Fatigue gets worse, appetite starts to disappear, and breathing may become more difficult. Palliative care or hospice care providers will help you with these symptoms. If you’re at home, make sure there is a plan for who will tend to your needs when these providers aren’t there. Home health nurses also can be a key resource at this time. It’s not unusual to be hospitalized if you need interventions that will help with complications such as bone fractures and breathing problems. You, your family, and healthcare team should talk about when it’s appropriate to call the doctor or nurse for help or advice. (Calling 9-1-1 generally isn’t recommended because emergency medical services personnel won’t know the details of your situation and your preferences.)

If you’re scared, talk to the hospice team about what to expect. They are experts at not only controlling physical symptoms such as pain, but also helping with any mental anguish or suffering that you and your family members may experience. Anyone who plans to be with you to the very end also can prepare for it. “It’s often harder on loved ones than on the person who is dying,” says Kelly Grosklags, LICSW, BCD. “You can simply say to them: ‘It would be helpful to me if you educated yourself on what this is going to look like.’”

Two resources you can recommend to them are Final Gifts: Understanding the Special Awareness, Needs & Communications of the Dying (Simon and Shuster, 2012) by hospice nurses Maggie Callanan and Patricia Kelley and the pamphlet Gone From My Sight by hospice nurse Barbara Karnes — often called “the little blue book” since its publication in 1985. Karnes also created a DVD titled New Rules for End of Life Care that can be very helpful. There are many other resources available through her website.

Your family members and friends should know that refusing food and drink at the end of life is normal as the body shuts down. Loved ones often feel like it’s their responsibility to get their loved one to eat or drink. Confusion and sleepiness are common as well. People sometimes say things that don’t make sense or seem incoherent. They might seem upset or agitated. At the very end, saliva and mucus can build up in the back of the throat, making breathing noisy. People sometimes have moments when they seem completely alert and lucid. These changes can be upsetting if your family and friends aren’t prepared for them. Once they have some information about what to expect, they can focus on just being there for you. And that’s what matters most.

“A Good Death”

“So, it’s a phrase that sometimes takes people back, ‘a good death’ — wow, what?” says Grosklags. “Well, a good life should lead to a good death. Tell people what you want. Have these conversations often and early. You get one chance to do this, and if there’s ever a time in your life when you get to be completely focused on you and what you need, it would be at the end.

“You know, we all live until we die. And I think as simplistic as that might sound, it’s also profound.”

Expert Quote

“Dying is not a medical event. Dying is a social, communal event. And when we’re at the bedside of someone who is dying, it’s all about the community, the togetherness, not the medical stuff that’s going on. It is that communal companionship, that presence, that means more than anything else in the days, the hours, even the months before death.”

–Barbara Karnes, RN

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